So that is another reason why it is kinda better that we rescheduled to February as well. If we went for the operation during this month, I wouldn’t be able to see this neurological doctor prior because he was off on vacation this entire month. In fact he is actually ‘retired’ and not seeing patients at all. Yet, he is still willing to see “past” patients once a week and thankfully I have been a patient of his years ago and therefore, he is willing to see me as now too. So at least I will have the ability to see one of the best and knowledgeable doctors to talk to and we can know exactly what to do. After all, my illness is so horrendous and spreads like a wildflower that the slightest thing sets it off. I don’t wish this disease on my worst enemy. The pain is so intense and the autonomic dysfunction is just simply insane. One time in California, I had a tube placed in me by just going up my nose, and dragged into my intestines as way to see if they could feed me by bypassing the stomach. However, not only was this a failed procedure, but it stirred up the illness so badly that I immediately couldn’t talk. They immediately put me into the ICU and gave me high doses of ketamine and thankfully, it worked and I regained the ability to walk with the crutches.
So if I undergo anything, I always have to have ketamine. Not only is it used as a pain reliever, but also it is a way of suppressing my illness. That is why I need to get to Mexico and why I have the weekly daily coma. When I get those comas, it is the only time I am not suffering. But unfortunately I can’t live in them 24/7 and that is why I only wish that I could get to Mexico so that I can receive the ketamine coma that I really require that would “cure” me. Even though I do go for ketamine every week here, it is only a temporary relief and it no way would ‘cure’ me or anything. We pray that it is even helping a little in stopping the spread of the disease even though it is spreading like a wildflower, but we don’t know how much faster it would be spreading without the ketamine. Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.
I really need the Mexico coma because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries. Since the amount of ketamine that I need is not FDA approved and the only place to receive it is in Mexico, but unfortunately I can’t get it done because of insufficient funds. They want over $100,000 for the surgery and it can easily be more than that. Yet ketamine is my only hope because it will hopefully ‘cure’ my underlying neurological condition, which is the basis of this condition. This ketamine procedure is very radical and rare, and I would be the 38th patient to undergo it. Yet, it is for the people that have exhausted all other options. During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.
So… in the meantime my body just continues to suffer like the domino theory and continues to shut down. This disease has caused so many other problems such as the severe gastroparesis, autonomic dysfurnction, etc. However, since my entire body is affected and it is causing all these other problems in my body, I need to do things that will buy me time and fight what this illness is doing to me. That is why I need to go to Cleveland Clinic.
In addition, now when I go to get my ketamine every week, I just don’t get ketamine. I have been getting vitamin bags too because of how sick I am and how we are trying to prevent me from getting and catching anything… even a cold! Everything is magnified for me and a simple cold is like getting the flu to me and can really literally kill me. Since I can’t take the FLU shot because the doctors have stated explicitly that could easily kill me and it is the time of the year where germs are prevalent because everyone is getting sick, I have to be extremely careful because I have no immune system and can catch everything. Even my dad has been joining me in taking the Vitamin bags. The doctor has been giving it to him because he can’t afford to get sick either. Not only can’t he afford to get sick because he needs to work and take care of me and everything, but he can’t get sick because then I can easily get sick since we live together.
You know… between getting constant IV when I go for ketamine and when I go for the surgeries to clean out my intestines every Friday, you would think that I wouldn’t be dehydrated. But due to my illness, I am extremely dehydrated. No matter what I do… I can’t quench my thirst. It is so annoying. I just can’t understand it.
This illness has taken a huge toll on my GI system and caused me to have severe gastroparesis. It has forced me to basically have my entire GI tract become dead, as nothing moves… from the esophagus to the stomach to the intestines. I literally can’t eat and I weigh only in the 60s. I am in need of a multivisceral transplant, which is a complete new GI system or in order words I need everything underneath the hood replaced except for the engine. With the multivisceral transplant, I would receive a new stomach, small and large intestine, pancreas, and liver. It is one of the most dangerous surgeries you can have and has been known to be the most dangerous transplant that you can have. It is extremely rare and in fact, only 6 hospitals in the country actually perform this transplant with Cleveland Clinic being one of them.
I need to have this transplant as soon as possible and especially get this colon removed because since nothing is passing through, everything (whether it is meds or food or anything else) is just sitting inside my body and rotting. The doctors are extremely worried that my intestines are going to rupture and that I am going to go into sepsis. As it is, my colon is spilling toxins into my bloodstream and these toxins are traveling in my bloodstream to all my organs and brain and poisoning them. So essentially I am also being poisoned to death.
I also need to have surgery done as soon as possible because intestines are literally twisting and having Intussusceptions. They are literally strangling themselves and it can be extremely fatal. I have had it for a while and whereas a regular person would need surgery immediately to correct this situation, I have been fortunate (if you want to call it that) to be able to live with it because my intestines are so dead and over dilated that they are so BIG and floppy. In fact, when the doctors go into my intestines, it literally takes a whole team to navigate my intestines because of how big and floppy they are. It will take them pushing on my stomach and holding my intestines in place. Just to get to my cecum, it can take over an hour, which is an extremely long time. Therefore, even though I have Intussusceptions and twists, I have been able to live with it. But now it has gotten to the point where I can’t live with it anymore and it is now VERY life threatening to me. I can’t even produce any stool anymore except for this mucous that is really weird. (Click NEXT to read more)
So it is essential that I get to Cleveland Clinic because it is the only place that I can have these surgeries. It is the best place for me because not only do they have the best surgeons there and are ranked as one of the best hospitals in the country, but they are one of the very few hospitals that even do this transplant. Plus, as I stated before, I need to have ketamine whenever I have something done and that is one of the very few places that will keep me on the ketamine for that length of time so that I can hopefully be able to tolerate the TPN and get the surgeries that I need. So we just hope and pray that I will make it there and that we receive funds so that it will be able to happen.
In the meantime, I guess I just have to keep up with what I am doing to hold on. I have to go every Friday to the OR so that I have my intestines cleaned out. After all, I can’t afford to have these toxins build up in my colon because if my intestine ruptures, then I can easily go into sepsis and die. Plus, an added benefit of this surgery every Friday is that it makes me feel better because it helps to remove everything that is just ‘sitting’ in my body.
So that appears all that is happening with Cleveland. Speaking about cleaning out my intestines though, I was originally scheduled today for the doctor to clean out my esophagus as well. However, when I went to the hospital today to have it done, the doctor all of a sudden refused to do the esophagus and just wanted to do the intestines. I threw such a fit because I knew that something was stuck in my throat like a pill because as I said before… my entire GI system is paralyzed, which includes my esophagus. Therefore, nothing goes down and pills end up getting stuck in my esophagus. It is extremely painful because not only is something stuck in my esophagus, but it is absorbing in the esophagus rather than the stomach, which is extremely painful.
So I ended up fighting him on this procedure and the doctor said to me that if he did the procedure and there was nothing there, he would “never” do another procedure on me again. Even the anesthesiologist made a comment of how ‘persuasive’ I am. I didn’t care what they said because I knew that something was wrong and that I needed it. So I told the doctor that I don’t care what he says, I need him to do it.
But guess what? When I woke up in the recovery room, the first thing that I did was grab my chart to see what they found when they did the procedures and guess what? I was totally right. There were pills stuck in my esophagus that they had to remove. So who was right? I know my body and I knew that something was wrong. I couldn’t wait to see the doctor to rub it into his face because he was so adamant before about not doing it and how he wasn’t going to do another procedure if there was nothing there. Look who was right and who was wrong. He usually comes to see me and my dad after I wake up to explain everything that happened, and I was just waiting for him because I couldn’t wait to give him my piece of mind.
So that appears all that is happening right now. I am so sick and I desperately need help. Therefore, I really pray that someone will be able to help me and that you will help me pray that I will get well, as well as send out the link of my fundraising site so hopefully I will be able to raise enough money so that I can receive the lifesaving treatment that I desperately need. Even besides the surgeries in Cleveland, I need medications and even medical treatments here that we can’t afford. I hate to sound like a complainer or a beggar or anything, but we are basically ‘broke’ and can’t afford anything. I desperately want to live and unfortunately we don’t have anything to help me get well. It kills my parents that no matter how hard that they try… they just can’t get me the treatments that I need. The bills that have just snow blown out of proportion. Not only are my medical pills extremely high, but because we have been dedicating all our funds to paying for my health, which we can no longer do, we can no longer even afford our regular bills, which have also built up. We can’t even afford our mortgage and we can’t even afford food on our table. I never thought that I would be so grateful on the days that my mom is able to go food shopping and we are able to have food on the table. As of last year, we didn’t celebrate any holidays and I know that it will be the same this year.
So if you can please do anything, I would really really really appreciate it. I would appreciate any donation whatsoever because even $1 is one less dollar that we have to come up with. If you can think of any ideas for fundraising, I would really appreciate it. If you can spread the link and really help get my story out so I can get the help I need, I would really appreciate that as well. If you need to contact me, please feel free to do so by contacting me at firstname.lastname@example.org.
We are just totally out of funds and totally out of ideas. Dad thought possibly of even when I go to Cleveland that he would leave me there and travel back and forth. Despite the fact that it wouldn’t be the ideal situation and I wouldn’t want to be left alone in Cleveland, we thought that at least this way we would possibly ne able to save some money because would could save some days on the hotel stay because he would ne traveling home and we could also have him work as well some days because to not to have him work while I am in Cleveland, which will be for about 6-7 weeks, it is going to really kill us. We will have no income during this time and we can’t even afford the bills now that he is working. We can’t imagine what it will be like when he won’t be working. We don’t even know how we are going to manage. However, this idea was clearly put down and is not even an option because when we spoke to the doctor about this, the doctors at the Cleland Clinic expressively said that he had to remain with me the entire time or they will not be able to do the surgery. They said that I need to have a family member with me at all times or they will not do it and therefore, it gives my father no other choice but to stay with me or I will not be able to have the surgeries. So… that is more reason why we need fundraising and donations. We won’t be able to have any funds or any income for 2 months, which is such a long time. Our bills, especially my medical bills, are exuberant. There is no way we can afford not to work especially when we can’t even afford them when they are working. So if there is anything that can be done… please help. Sorry to sound like a broken record, but I am desperate. I am going to die without this surgery and all our funds are depleted and we sold everything that we could. Please help!!
I guess in the meantime I just need to try to keep up my strength and to try to keep going. I have my animals that are my best friends and I also am reading. I have the new SHOP-A-HOLIC book called SHOPAHOLIC TO THE STARS. So I plan on reading that.
Well… I hope that all is well with you. Thanks again for all your help. When I know more information, I will write again. In the meantime, have a happy holiday.
I know it has been awhile since I have written, but the truth is that I have not been well and lots have been happening so quickly that my head has been spinning. If I had written what was happening, it probably would have been totally different by the time you read what I had written. So between not feeling well and how fast everything has been happening/changing, I just haven’t been able to write.
So much has been happening lately and I am not doing well at all. I am rapidly deteriorated and I am so scared that I am not going to make it through this. I am so scared because I know how desperately I need certain treatments and medications, but unfortunately it is all contingent on the amount of funds that we receive. So essentially, the truth of the matter is that staying alive and being able to “live” is really out of my hands. All I can do is hope and pray that people will be generous and sympathetic as they hear about my situation and as a result, hopefully they will donate. It really stinks that staying alive and receiving treatment is not in my control but rather in the control of the world.
I hate begging and pleading for donations because I hate sounding like a broken record. No one wants to keep hearing the same story over and over again, but the truth of the matter is that I just want to get better so badly that all I can do is plead for funds. I see all the time people getting help on TV and through the media, but unfortunately, I can’t get the same aid that they do no matter how hard I try. I have tried countless times to reach out to the media, celebrities, etc. but I have learned that just like everything else in the world… it isn’t “what” you know in the world, but “whom” you know and unfortunately I don’t know anyone. So…. I am kind of out of luck in that area.
In addition to asking and hoping that I will receive aid from these letters, I am also writing these letters to hopefully bring awareness to my condition so that people don’t have to suffer the same horrible suffering that I am going through. Unfortunately, I am suffering from a very rare, life-threatening and debilitating disease that not many things are known about. Just as I am a guinea pig to hopefully find a treatment that will work, I am hoping that I am also serving as a way of showing the world what this disease really is all about and how you can still make a difference and survive even if you are “sick.” I am here to show you what a true “fighter” really is and how even if you are stricken with a debilitating disease… you don’t have to just crumble up in a corner and die. I have always wanted to make a difference in the world and society from when I was a little girl. I always had the ambition to become a doctor so that I can help others. Yet, even though I never got to achieve my actual dream, I really hope that I can still achieve my goal and dream of making a difference in the world.
(click SHOW ALL to read on)
Being sick is not easy and one of the hardest things in life is to gain support of others. As if finding a knowledgeable and caring doctor wasn’t difficult enough, finding caring and supportive friends, as well as compassionate people to be around can be even more difficult. Most people are simply not capable of understanding, unless they have the misfortune of an “illness” of their own.
So many people take to so much for granted like simply washing their hair, eating, walking, or paying the bills. People even take their health for granted because they are used to going to a doctor, receiving a magic pill, and instantly they are better. They don’t remember that before that pill, they were exhausted, achy all over, and could barely get out of bed. Burt fortunately, the illness passed and they were able to get back to their old self and usual activities. Yet, think about if that wasn’t the case. Think that if everyday you had to hobble around on crutches, was extremely tired as if you have not slept at all, and was in the most excruciating pain that you can imagine while you performed every single task you had to do throughout the day. Think how you had to feel this way throughout going to work, school, doing regular tasks such as washing your hair, and even watching TV. Tasks that you were able to do easily would become nearly impossible. It is stressful, exhausting, and depressing. Yet, you can’t just shut it off and tuck it aside. The person suffering from all this has to face it 24/7 and doesn’t get a millisecond of escape from it. Even all dreams that you dreamt of, as well as everything that you worked and strived for, ends up getting robbed and taken from you.
As my dad always tells me, “Health is wealth and when you have your health, you have everything.” We have really lost everything and never did I think my life was going to be like this, as this illness has really caused a HUGE financial burden on our family. I always lived a “comfortable” lifestyle growing up, as we weren’t rich and we weren’t poor. Yet now, everything is snowballing out of control. The bills are piling up and we have exhausted all our funds so there is nothing left to pay for the lifesaving treatment that I desperately need to survive. We have not been on a vacation in 10 years, we can’t afford the bills, we can’t afford the mortgage, and even going out to eat has stopped. Putting food into the house is something that we also struggle with. Yet, I continue to suffer and deteriorate because nothing is “free” in life and unfortunately I need very expensive treatments and medications, as well as money to see doctors across the country.
So if you are getting tired of seeing these ‘pleads’ or my blogs or anything else, please know that I am doing them not only so I can hopefully receive donations so that I can afford the lifesaving treatment that I desperately need, but so I can hopefully make a difference in the world. I may not be able to be my doctor now and “cure” the world, but I still hope my story will make a difference in the world because not only do I want to bring awareness to this rare condition, but also I want to show that you don’t have to just “give up” because you are ‘sick’. As you have seen throughout my battle of this illness, I have fought tooth and nail to stay alive. No one can say that I haven’t tried my hardest. But unfortunately, I have learned that no matter how hard you try, some things are just beyond your control.
So when you see these letters, please know that they are coming from a person who is writing because I want to live so much. I have so much to offer the world and I only wish that I can receive the lifesaving treatment that I so desperately need so that I can go on and enter the medical field so that I can further help others. I have suffered both physical and emotional pain that nobody should ever endure. I don’t wish this on my worst enemy. So I am only hoping that one day I will be “free” from this life of suffering, but I know it is out of my hands and in the hands of the rest of the world because we can’t afford the necessary treatments that I need on our own.
That being said… let me tell you a little of what has been happening. Even though everything is “booked,” it is all contingent on whether we receive enough funds. We are crossing our fingers that it will all work out because I am not doing well. The doctors are even seeing how rapidly I am deteriorating and getting very fearful that I am not going to make it much longer. If the doctors could have their way, they would have me at the Cleveland Clinic tomorrow. But unfortunately they don’t have to worry about the financial issues and paying the bills like we do.
One week from tomorrow, we are supposed to be leaving for the Cleveland Clinic. We are supposed to be meeting with some doctors and finalizing everything with them I am also having preoperative testing because surgery is in December. There is quite a lot on the agenda when we go there. But, the doctors have promised me that I will be able to go home on Thanksgiving so that I can spend Thanksgiving dinner as a “family” since my dad and I are the only ones going and my mom is staying behind. So we are taking the ONLY flight home on Thursday and as long as the weather holds up, we are coming home Thursday so that I can be with my mom and we can be a family for Thanksgiving.
It is very important for me to be here for Thanksgiving because we will not be celebrating the holidays this year. My dad and I will be at the Cleveland Clinic for the holidays because I am supposed to be having mega surgery. My mom will be staying behind to watch the house and keep the business going as much as possible. We all can’t afford to go to Cleveland and close everything up, so we have to split up. We probably won’t see my mom for at least 6 weeks. It is also very important to celebrate this holiday because the doctors feel that if something isn’t done to “help” me, this will probably be my last thanksgiving too. So I want to celebrate it as family and be with both my mom and dad during this time.
I just hope that we will be able to have Thanksgiving dinner because of the expenses. My parents were talking about not having Thanksgiving because of how much money it costs and everything. However, I told them that I don’t care how much it costs; this is one thing that I definitely want. If something has to give to make this happen… then so be it. My family has suffered so much as it is, they deserve to have one happy holiday… especially Thanksgiving when it’s a family holiday and it is a day of giving “thanks!” After all, I am very thankful that I have two of the best parents in the world. I told them that I don’t care how little we make the dinner, but we are definitely having Thanksgiving. I just hope the weather holds up because you never know anymore with this weather.
(click SHOW ALL to read on)
After surgery! Am I really under there?
We are supposed to be heading back to Cleveland on December 14th because I am scheduled to have heart surgery on December 16th. They are supposed to be taking the calcium calcifications out of my coronary heart, as well as putting lines into my heart as well. They are putting in a central access line so that they can use it for an emergency, as well as for upcoming surgery that is taking place 2 weeks later, as it will be a massive surgery and they need an “emergency” access port. They are also going to try to administer TPN through this port because they want to try to make me as strong as can be for that upcoming surgery. I only weigh in the 60s and I have no reserves if something should happen. This surgery is extremely dangerous and risky, but in my state… it is really a disaster. So they are trying to prepare me and make me as strong as can be for it.
The next surgery is December 30th. They are going to be removing my colon at that time. My entire GI tract is “dead” and nothing is passing through. Therefore, I need to have a multivisceral transplant, which includes receiving a new stomach, small and large intestine, pancreas, and liver. However, we are first worrying about removing the colon because I am becoming intoxicated by everything sitting in it. Since nothing is passing through it, whatever is getting into the colon (such as the drugs and the little food that does get in) ends up rotting and the toxins entering my bloodstream and going to my organs. As a result, my organs and brain are becoming intoxicated and my entire body is dying because I am being poisoned. When the surgeons take out the colon, we will know how urgently the transplant will be needed because it depends on the small intestine and how it looks.
So I will be having some massive surgeries ahead of me. I will be in Cleveland for about 6 weeks and therefore, I will be celebrating Chanukah, Christmas, and the New Year in Cleveland. I won’t be home until the middle to later part of January. I am really scared because I know how dangerous these surgeries are in general… let alone someone in my condition. I am just hoping that everything works out and since the surgery is December 30th, I am hoping that this will mean that I will be starting 2015 as a brand new and healthy person. My dad is dreading the 6 weeks there because he can’t imagine staying in a hospital for 6 weeks. He says he is going to go “insane.” I probably will end up killing him because he can’t even sit still in the hospital for like 1 day… let alone 6 weeks.
All I know is that I am going to miss my mom and my animals. I really wish I could take them all with me. But unfortunately they can’t come. I tried to get my mom to come for even the surgery especially because it is 2 days before the New Year and the business is closed for the New Year, but we just can’t afford it. But, we have our IPhones and that means the Facetime will be going like crazy. So… even though she won’t physically be with us, she will only literally be a phone call away and we will be able to still see each other.
In the meantime though, I have been really deteriorating and as a result, I have been undergoing ketamine comas/infusions every week. This past week I even had a blood patch transfusion to the brain because I am getting pressure changes in my brain. I wasn’t expecting that to happen, but when I went for the ketamine, I learned that it had to be done. It was so painful and I am still suffering from the pain of the needles.
During a blood patch transfusion, they literally drain your own blood and use it by putting it back into you through your spine. They did it while I was under the ketamine so I wouldn’t feel it so badly, but apparently I really felt it still because my dad told me that he could hear me screaming down the hall. He told the doctor that “she better not remember any of that from the way she was screaming!” I only hope that it worked!
I have also been going every Friday for surgery on my intestines. They have been ‘cleaning’ them out as best as can be because of the fact that the toxins are spilling into my bloodstream and intoxicating my organs. They are hoping to buy me time by doing this. They are also hoping that this will alleviate the intestines perforating or me going into Sepsis.
The doctors are also talking about having me go for brain surgery. There is a very well known brain surgeon who is interested in my case and he is in the process of reviewing my case with my doctors. They want to put a machine in my brain because they think that it will really help and make a difference. I wonder what they will think of next.
So… that appears to be all that is happening. So as you can see… I have a lot on my plate to deal with. However, it is all contingent on funds and therefore, we are only hoping that we receive the funds that we need so it all works out. So if you can please spread the word that HELP is needed and please pray that we get the help that we need so I receive the lifesaving treatment that I desperately need, we would really appreciate it.
Well… I guess I wrote enough for right now. I have wanted to start my new book written by Sophie Kinsella called “Shopaholic to the Stars.” Maybe I will do a little reading tonight.
Thanks again for reading and taking the time to support, encourage, and pray for me. Remember that donations are very much welcome at www.gofundme.com/FallonMirsky.
If you have any suggestions for fundraising, they are much appreciated as well and can be sent to Femirsky@gmail.com
October 24, 2014
I wasn’t going to really write tonight, but I figured that I would write at least a little because there is so much happening right now that honestly my mind is spinning so fast that I am surprised it hasn’t came off my shoulders already and also because I never know where I am going to be anymore. I am also writing because I want to tell you how urgently I need some financial assistance through donations because I am really deteriorating. I thought that we would have at least a little bit of time to try to raise the much-needed funds to try to get me the life-saving treatment, but unfortunately, things aren’t going according to plan. But before I begin, let me begin by bringing awareness and help to my condition. October is known as DYSAUTONOMIA month.
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, digestive tract operation, sweating, breathing, and in severe cases, death. There is no cure for any form of dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure for each form of dysautonomia. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.
I am at the point that I don’t know about anything anymore. We were originally scheduled to leave for Cleveland Clinic on November 23rd to see some doctors and to get all the final pre-operative testing that would be needed for the upcoming huge surgery, which would be taking place in December. I was scheduled to have because not only am I suffering from dense calcium calcifications in the coronary artery that can easily give me a heart attack and/or stroke, but also the doctors want to also put ports/lines in to my heart so that I can have a central access into me. I am in desperate need for the central access because the surgery that will be taking place afterwards is extremely dangerous and risky and they will need all the access that they can get. Also, with the way I am deteriorating, they don’t want to keep giving me needles and such because my veins can’t take it. The doctors also want to try giving me TPN again even though I have failed it many times in the past due to the autonomic dysfunction because I am severely underweight, as I only weigh in the 60s and my BMI is like 10.8. Therefore, I desperately need the TPN because the upcoming surgery will be very hard on my body and I will need all the help in getting me strong and being able to recover from it. This surgery is extremely dangerous and hard on a normal person, but in me it is a hundred times worse. Everything is magnified for me and I have no reserves to help me in through the recovery process. God forbid I get an infection or something… I am a goner. (Click SHOW ALL to read more)
The surgery that I am having after the ports and lines are placed in my heart is extremely dangerous and risky. However, my GI tract is completely dead and nothing passes through and I really have no other choice at this point. I have toxins spilling out of my GI tract (especially my colon) and going into my bloodstream, which is then affecting my other organs in the body and brain. I am literally being intoxicated and poisoned because of my GI system and if something isn’t done fast, I will die. Therefore, the doctors have been scheduled to have my colon completely removed after having the heart surgery and receiving 14 days of TPN. I will be there for quite some time, as I will have to be in Cleveland basically all of December and January and therefore, it is really important I raise a lot of funds because it is going to cost a lot of money and that is also going to be the time that dad won’t be able to work and bring any income in because he will be with me.
So on December 23rd, I am scheduled to have my colon completely taken out. I figured that even though this is an extremely and life-threatening surgery, I felt that nothing really bad can happen this time because it is 2 days before Christmas. Santa wouldn’t let the holiday be ruined. I also felt that I would start 2015 as a healthy individual and leave all my sickness in the past and in 2014. Not only will 2015 be the start of a new year, but I am hoping that it will be the start of a new me. However, I also do need a multivisceral transplant, which entails receiving a new stomach, small and large intestine, liver, and pancreas. Depending on how bad the small intestine is affected when they remove the colon, it will determine how urgently I will have to have the multivisceral transplant.
The multivisceral transplant is known as being the most dangerous transplant that you can have. It is more dangerous than heart, lung, etc. In fact, only 6 hospitals in the country really do this transplant, but thankfully Cleveland Clinic is one of them and the surgeon that I am having is one of the best. In fact, he has done the most multivisceral trnasplants ever, so that makes me feel a lot better. But we do know that this is not going to be a “walk in the park” because not only is the surgery extremely dangerous and risky, but the recovery is not much better either. The survival rate from this operation isn’t too great, but I am at the point that I have no other choice. It is either that I go through with this operation and transplant and have a chance of life… or I basically throw the towel in and that is the end of it.
So as much as I know that I have a very long road ahead of me, I know I still want to live my life. My illness has robbed so much of my life from me and I have yet to experience so much. I want to travel, go gambling in Las Vegas, go to England, go to the Bahamas, go to Disneyworld, etc. I even want to become the doctor that I always dreamed to be so that I could make a real difference in the world and help others so that they don’t have to go through the same thing that I went through. So… even though I know that it will be extremely difficult, I really want to do all this and hope that I make it.
When I was younger, whenever I set my mind to do something… I accomplished it. I was a straight “A” student, got into New York University, was a competitive figure skater, performed at Rockefeller Center, received a perfect score on the highest level on NYSSMA (which is a New York Music competition) on the violin, achieved to get into Long Island Strings and All-County (which are 2 very elite orchestras), was Concert Mistress of my orchestra, was “Spirit Homecoming Queen,” etc. Whatever I wanted to accomplish, I succeeded in doing. Yet, this is one thing that no matter how hard I am trying to overcome this illness, I just can’t do it.
Sometimes I wonder what I did to get this disease. This disease is so horrendous that I don’t even wish it on my worst enemy. I never smoked or stole or did anything bad. So sometimes I wonder why I even got this disease in the first place. However, I know that I am a very strong person, but I honestly don’t know how much more I can take. I am so physically and emotionally exhausted. My parents say that “God wouldn’t give me anything that I couldn’t handle” and that I am “being tested for something big!” With all that I am going through, it better be something BIG because this illness is the most horrible thing you can imagine. No one can understand this disease unless they are actually experiencing it. My dad always tells me that he would “take away the illness from me if he could.” But I always tell him that he wouldn’t last a split second in my shoes. I never met something that you never ever get a break from. I just totally suffer 24/7. There is never a millisecond that I am not suffering unless I am under ketamine or propofol. Those are my “vacations” from my Hell!
Before I got sick… I was so....Normal. I was your typical girl with everyday problems who loved to socialize and soak up life's best offerings (including cocktails). I was going to school to complete my studies in psychology and was hoping to follow up with going to Medical school so I could become a doctor. I had the strong desire to study medicine and even though I have been not able to physically attend classes all the time, I have somehow managed to complete a number of subjects online. I guess for now I'm still hanging onto the hope that sometime in the future I will get well enough to be physically and mentally capable of completing this dream of becoming a doctor.
My family are my rock. They've all endured so much as a result of my illness. I am certain I could not get through this without each of them. All parents help me everyday to keep hope and belief that things will get better. My dad is an inspiration and an amazing man. He has managed to take me to all my appointments no matter if they are local or throughout the country. He does this all while working full-time in a high pressure job and is always on the go. I actually don't know how he does it all. He is my knight and shining armor, my superman, my best friend, and my dad!
For now I take each day as it comes. I embrace the positives as much as I can and try to push through the negatives and make them work for me. Recovery and healing is hard work on so many levels and I will continue to persevere in hope for the next good day to come... (Click SHOW ALL to read more)
But I really need help and help now because I don’t know honestly if I will be able to make it to December to have the necessary surgeries. Therefore, we are in desperate need of funds now so that we can go ASAP because to be quite frank… we are BROKE!! I hate to say it and complain, but it is the honest truth. It pains me to say that and to plead for money, but you have no idea what it is like to know that you are dying and your life is literally hanging on the line. You have no idea what it is like knowing that there is a potential treatment that can help you but unfortunately you can’t attain it because you don’t have the money to get it. It is like being a dog and someone is holding a nice delicious dog bone right in front of your face and you aren’t allowed to have it. Sometimes I feel like this is all a big tease. I am only praying that I am going to find the funds to go to Cleveland Clinic so that I can get the lifesaving treatment that I desperately need because I can’t live this long anymore. I am also praying that I even make that long to get it.
Things have really gone from bad to worse. The doctors have always said that I am a “time bomb” waiting to detonate and to be quite frank, I think the time has come that it is happening. It is at the point we don’t even know where we are going to be from one day to the next or even if I will make it through the night or day. I am basically just falling apart.
To begin with, I ended up getting into a car accident last week and fracturing my ribs and sternum. Unfortunately though there is nothing that can really be done to correct this because what really needs to be done cannot be done on me because of my illness. For a typical person, they would have needed surgery and screws and plates placed into them. However, in my condition, that is not even an option. I am too fragile and too hypersensitive for that to happen. Plus, since I weigh only in the 60s, there really aren’t even any places to put the plates and screws. So in the meantime I just keep hurting especially when I breathe and cough. It even hurts worse when I eat because since I can’t keep food down and end up vomiting, you can imagine how much that hurts. I also keep feeling a cracking and clicking in my chest, but I guess that is normal considering all that is happening to me and comes with the territory.
In fact, we kind of ran into a similar problem when I broke my hip a couple of years ago. I really ideally needed surgery but due to my condition, it really wasn’t an option. Therefore, I was bed rested and I basically had to be carried around for 12 weeks. Can you imagine? The doctors and us just prayed it worked because if it didn’t we didn’t’ know what else to do because surgery was definitely not a good option. Thank goodness though, it had worked and I healed.
My bones are just so fragile and weak. In fact, I desperately need a bone infusion that cannot be done in New York and that is one more reason why I am going to the Cleveland Clinic in November. I am going to be having it done there because the doctors are so scared that I am going to have a life-threatening fracture and that is going to be the end of it. But there is also the problem with this bone infusion supposedly causing more osteonecrosis, which I am already suffering from. So the doctors are also scared to give me this bone infusion because I am already suffering from the osteonecrosis and they don’t want to make it any worse.
Speaking of the osteonecrosis, I ended up having surgery on my jaw and teeth a few weeks ago because I had a very bad infection in my jaw and because of the osteonecrosis. The doctor ended up removing part of the jaw and three teeth. However, I am still in so much pain and even though it has been extremely difficult to eat and drink beforehand that all I could eat was extremely limited stuff because of my GI paralysis, it is even less now. I am basically only able to eat ice cream and egg whites. However, I do need to have these medicated ice-pops since they my heart isn’t too good, and unfortunately I can’t have them with this jaw surgery now. It is causing me so much pain. Just for me to even eat a single morsel of food such as ice cream, ices, or egg whites, I have to take more pain medication to try to ‘numb’ the pain.
I am in so much pain from that surgery on my jaw still. I told the doctors that if I knew how bad this was going to be, I would have never had this surgery and would have let the infection takeover. Not only am I in such severe pain in general, but also I can’t eat or drink anything. In addition, the jaw where he removed part of the jaw and teeth is now coming through the gum as well. More of the jaw has even been dying off too. It is like there are razor sharp bones coming through my gums. It is almost like I am a little kid and instead of having my permanent adult teeth growing in, I am having these razor sharp bones come through instead. It is extremely painful and the doctors have no idea what to do. They are scared to do anything because they are worried that if they did do more and remove more of the dead bone, it would only make things worse. So… in the meantime… I am suffering so much.
There is something going on strangely with my head. I don’t know what it is, but there is this really weird thing going on. If I touch my forehead it basically spasms up and it makes it feel like I am going in the opposite direction that I am touching. It is really weird. Plus it has this weirdly numbing feeling. Something just doesn’t feel right.
My intestines aren’t even doing as good as they have been doing. In fact, they have deteriorated a lot as well. It feels like they have completely become lax and over dilated. I cannot go to the bathroom at all and it is really uncomfortable. Gas isn’t even passing through anymore.
So in the meantime I have been going for my weekly surgeries to clean out my intestines. The doctors are having a difficult time starting the IVs because my veins are collapsing and not as strong as they once were. The doctors have also noticed that I am in a lot worse of shape even though I still have been having these “cleanings” once a week. I need to have my intestines cleaned out because if I don’t, then anything that I take in and I don’t vomit (whatever food and medication remains) will just sit and rot in my colon. The doctors are afraid that it will cause my intestines to rupture and if that happens, I will end up having sepsis and end up dying. In addition, I am having all those toxins pouring out into my bloodstream, which are essentially shutting down my organs and poisoning and intoxicating me.
In addition, I have also had the doctors constantly looking down my esophagus as well and it appears that more stuff than ever is getting stuck. The doctors literally have to push down all the pills that I take because they are getting stuck up in the esophagus instead of going into the stomach. So this is also causing me discomfort because instead of dissolving in the stomach where they are supposed to dissolving and where there is stuff to make you more comfortable, I have it burning up and choking me in me esophagus. The doctors also noticed that my stomach is filling up even more than before so the paralysis is even worse than ever. (Click SHOW ALL to read more)
I don’t even recognize myself anymore. I used to be the type of person that would try to take the least amount of pills possible because I hated taking pills. Now… I just don’t care anymore. I am willing to do anything and everything just to get out of the pain. It is the most horrendous pain you can imagine.
The doctors have noticed how bad I have gotten and have increased the ketamine done that I am receiving. I used to get the ketamine coma/infusion every other week besides taking the ketamine at home, but now since things are so bad, I am now taking the ketamine infusions/coma every week. Even though I need a much higher dose because the dose I really need is not FDA approved and can only be given in Mexico, at least this lower dose still helps with the pain and we are hoping that it is “containing” the illness as much as possible.
However, the last time I went for ketamine we ended up having some complications. However not all complications are bad… especially not this one. It turned out my veins collapsed in my arm and I became bloated and filled up on ketamine because the ketamine was no longer going into my veins. Therefore, My arm became all swollen and everything. The doctor had to switch arms so that I could continue having the ketamine, but in the meantime I had so much ketamine in my left arm because it was so swollen and everything that I would be getting ketamine all throughout the night as well because it would take time for the swelling to go down and the ketamine to enter the cells. You know? I didn’t even know all this had occurred because I was under ketamine when it happened. When I came home and saw the bandage all wrapped around my arm because the doctor wrapped up my swollen arm with a bandage and such, I asked why I had that and why my arm looked so fat. It was only then that I found out what had happened. My dad has a habit of keeping things ‘quiet’ until it has to be known. up that was filled all up with ketamine, but I couldn’t believe taI So even though we ended up having that complication, it wasn’t all bad because I at least got a longer dose of ketamine. You know?
So in the meantime... all I can do is hang in there. My doctors want me to head to Cleveland Clinic as soon as possible especially with everything that is going on. I spoke to the doctors at the clinic and they are having a meeting about me to see what is going to happen. I should know tomorrow or on Monday as to what the plan is. Between what is happening with my heart, body, and my head… I am really not doing well. Things are happening to me that have never happened to me before. I am also aspirating like crazy and I am having an extremely hard time breathing. The autonomic dysfunction is totally out of control and the slightest hot thing will overheat me and the slightest cold thing will make me freeze. All I know is that it is urgent that something be done and done fast.
Even though the surgery is scheduled to later on, we don’t think I am going to make it that long especially with all these other things happening. We are thinking about going through the ER to get into the hospital because of how bad things are. But we will still have to have money and funds behind us if we were to do that. So if you can please help me raise funds whether it is by spreading the word, fundraising, or anything else you can think of, please help me. I am really desperate. Please spread the word of my site, which is www.gofundme.com/FallonMirsky.
If you really need to get in touch with me, you can always contact me at Femirsky@gmail.com.
On a better note, my favorite author came out with her newest book finally. I haven’t started it with everything going on because I have been too weak to do anything. But I am looking forward to starting it soon. The book is called SHOPAHOLIC TO THE STARS. I read all her other books and they are great.
Halloween is quickly approaching and this used to be my favorite holiday of all times. I used to really deck out our house with decorations and I must say that we had one of the best looking houses on the block. We had corn stalks and decorations and skeletons, etc. It was awesome. I also had a blast cutting open the pumpkins, carving faces on them, cooking up the pumpkin seeds, etc. I even loved handing out candies to the kids and everything else that went along with the wonderful holiday.
But I don’t know what it is but now that I am so sick and not feeling well, I don’t have the same enthusiasm that I had for the holiday. I really can’t be bothered with the holiday at all. I have not decorated at all, not excited to give out candies to the kids, not even excited to carve the pumpkins, etc. The only reason I will carve the pumpkins probably is to get the pumpkin seeds out and give them to my family. After all, nothing tastes the same as fresh pumpkin seeds from the pumpkin. I don’t know why but they never taste the same as when you buy them in the store. The same thing goes with apples. Even when you buy them “off the tree,” it doesn’t taste the same as when you actually pick them off fresh off the tree yourself. What would Halloween be like if I didn’t have pumpkin seeds for my family? So I will probably do it on Sunday since it is close enough to Halloween so it shouldn’t mold and make it to Friday and this way my Dad will be around to help.
I guess I should take advantage of this Halloween too because I love pumpkin muffins, seeds, etc. If all goes well and I have surgery and everything, who knows what I will be able to have. I already know that when I am on TPN that I won’t be able to eat anything. So I only hope that I get the multivisceral transplant and it is successful so that I can eat like a normal person again.
Well… I guess that is it for right now. I think I wrote a lot. I want to rest a bit because got to get up in a bit for the hospital. After all, it is Friday and it means that I am going to get my intestines cleaned. Hopefully I will hear from the Cleveland Clinic or the doctors for my jaw and we will know what the next plan of action will be because I can’t take it much longer and all these weird things are happening that never happened before. But in the meantime, please help me raise as much money as possible because without it, none of this is going to be possible. Thank you so much for all your help. I can’t tell you how much I appreciate it. No help is every too little.
October 15, 2014
I know it has been quite a while since I have written, but a lot has still been happening and I haven’t been well enough to write. I also didn’t want to write until I knew all the information completely because I didn’t want to give you any wrong information. So I figured that since there is so much to know, I would at least try to give it as much as possible.
I guess I should start by saying how I am rapidly deteriorating and desperately need help. I guess that goes without having really to be said already because I say basically the same thing in every posting. However, each time I think that it can’t get any worse and that I suffered enough… It continues to worsen. I just keep spiraling downward and deteriorating. I cry all day long and even cry all night long as well. It is so unfair that no matter what I do, I just continue to suffer. I don’t get a moments relief. I just honestly don’t know how much more I can take.
I know I say that all that time and I am still plugging away, but to be honest… I am so tired. It is at the point that I am getting even too tired to fight. I am losing my will to fight because no matter how hard I try, I just keep hitting brick walls and continue to suffer. I suffer physically, emotionally, psychologically, etc. This is definitely not a life a 32 year old should be living and I don’t even wish this life on my worst enemy. I feel like a dog when they are teased with being given a bone because I feel that I am being teased with treatments and medications being held in front of my face that can possibly help me and yet, I can’t even try them because we can’t afford them. Its just so unfair that I am suffering so much and there could be something out there to help me and yet I can’t even try it to alleviate my suffering because we can’t afford it on our own and unfortunately we aren’t receiving the donations that we desperately need in order to attain these life-saving treatments.
To begin with, I have to still find a way to raise money for the Cleveland Clinic because we are going to be heading there for surgery and it is going to be extremely expensive. We are leaving in November for a week so that we can meet with the doctors and finalize the testing that is needed for the upcoming surgery that will be taking place in December. Luckily, the doctors are allowing me to come home on Thanksgiving because they know how important that holiday is for me and how much I want to spend it with my “family.” The doctors know how important it is for me because this can be my vey last “thanksgiving” since I am not doing well at all and I am rapidly deteriorating. The doctors have already clearly expressed that if something isn’t done fast and quick, I will not make it much longer because I am a time bomb that is detonated and going to explode. Plus, the treatments that I am going to need and undergo are extremely risky and dangerous. That is why I very few hospitals perform these treatments and I have to travel across the country (even to Mexico) to seek these treatments and top specialists because there aren’t many knowledgeable specialists in the area. You would think that living in New York would give me all the needed opportunities I would need to get well, but that is definitely not the case at all. So besides the money needed for the treatments itself, the medications, the appointments, etc. I also have to worry about the traveling expenses as well.
Besides going for the pre-surgical tests in November at the Cleveland Clinic, I will also be seeking the expertise of the endocrinologist because I need a bone infusion that cannot be given in the New York area. I desperately need this infusion because my bones are extremely weak and they are scared that I am going to get a life-threatening fracture. (Click SHOW ALL to read more)
I am also going to be seeking the expertise of the heart surgeon. One of the surgeries that I will have to undergo in December is heart surgery because I need to put lines and ports into my heart. I will also need to put a central line into my heart to serve as an emergency access port into me for the massive surgery that I will be having later on that month when I have my colon removed. They also are going to be using those ports for TPN because since I am so weak, fragile, and only weighing in the 60s, they are going to try to make me as strong as possible to recover from this surgery to remove the colon as well because it is massive surgery. In addition, the ports will serve as lines to put medications and take bloods from me because I am constantly being stuck with needles, which can easily cause a massive infection on top of everything else… not to mention the pain I am enduring each time that can be alleviated by having this done.
But I also need to see the heart surgeon as well because it was discovered that I have dense calcium calcifications in my coronary artery. So since I have these blockages now, the doctors have to also take care of this as well because I can easily have a heart attack and/or stroke because of it. Never a dull moment.
I am also going to be seeing one the top specialists in my neurological illness. There are not many doctors in the world who are really knowledgeable and can say that they are a “specialist” in my illness. Yes they might be ‘familiar’ with my illness, but there are only about 3-4 doctors that are really specialists in my illness who have been doing research, writing papers on it, and experimenting with different surgeries, and talking about it at conferences. So the doctor that I am seeing happens to be one of them and in fact he doesn’t even see “new” patients. Fortunately I have seen him in the past and therefore, he will be seeing me again.
It is very important to seek the expertise of this doctor because I have really worsened and need desperate help in this area especially since I can’t get to Mexico right now to get the radical intensive ketamine coma in Mexico, which is the treatment that I ultimately need but costs over $100,000 and we can’t afford it. I have developed severe spasms throughout my entire body that need help as well. I was also told that with everything that is happening, I am also in need of brain surgery.
Yes... you heard right. I am in need for brain surgery. Now on top of everything else I need brain surgery. I feel like a guinea pig and a huge science experiment. Yet, the doctors have discussed it and I need the brain surgery because they think that this is the only way to help my neurological disease besides having the expensive ketamine coma in Mexico, which we can’t afford. Not only will the brain surgery hopefully help my neurological condition, but hopefully it will also help my severe gastroparesis as well.
Since I am in need of brain surgery and brain surgery is one major surgery that you want the ultimate best doctors performing, we are planning to have the surgery also at the Cleveland Clinic because they are known as being one of the best hospitals. During this time, they will be undergoing very rare, risky, and extremely dangerous surgery. They will not only be operating in my brain, but they also are going to be putting a machine in my brain that will hopefully help me deal with the illnesses and alleviate it.
The brain surgery has been saved for the rarest cases. In these cases, it has been successful in the sense where people are able to not be as paralyzed as they was prior to the surgery, the pain is reduced, is able to eat, etc. All of them have experienced some benefit in both pain and mobility from the treatment. They will be operating in my motor cortex area.
As stated before, I am scheduled for surgery in December. I am going to definitely be having the heart surgery to have the ports and lines placed on December 8th. I will then undergo 14 days of TPN to try to make me stronger. On December 23rd, I will then have my colon removed. Depending on how bad it is when the colon is removed, it will determine how long I have until I need to receive multivisceral transplant, which incorporates receiving a new stomach, small and large intestine, spleen and pancreas.
So in the meantime I gotta hang in there. I have been doing so badly that they increased the amount of ketamine comas/infusions that I receive in New York to a higher dose and to a weekly basis. Although I was taking the ketamine at home every night, I was only having the ketamine comas in the hospital every other week. But since it has gotten so badly, the doctors have switched me to every week.
The doctor also increased some of my meds and placed me on Klonopin. It has been doing me the best help at night because it has been “knockin” me out most of the time. This medicine is better than the others because it is also supposed to help with all the anxieties that I am feeling, as it wouldn’t be normal not to feel overwhelmed with all that I am going through. You know? In addition, this medicine is the one medicine that has the least impact on my GI system and the least addicting out of all the other meds that I am on. This is a good thing because I don’t want to be on such addicting medications or medications that will further harm me and further ‘paralyze’ my GI system.
However, my miracle drug still happens to be my ketamine and if I could remain in the ketamine coma 24/7… I would. Even taking the ketamine at home is the best thing out of everything. The only problem is that this ketamine is extremely expensive and we can’t afford it. It is the ONLY medicine that gives me relief throughout the illness. But, like I said before, it is not a drug that is easily affordable. You can’t even get it at a regular drugstore. I have to go to a special pharmacy so that they can especially compound it for me.
So not only are we having difficulty paying for treatments, going to appointments, traveling, etc. we can’t even pay for medications that I desperately need. I desperately need my meds in order just to get by. My medication is extremely expensive and I don’t take a little amount either. In fact, I take over 50 pills daily and the amount of medication that I take is enough to kill a horse. Doctors have already said that a 300-pound man wouldn’t be able to handle the medication that I take on a daily basis.
But my medication is so very expensive and it isn’t even all covered by insurance. For example, a little bottle of ketamine costs me about $200 and it will only last me about 1- 2 weeks (if I am lucky). So… if you can please help me raise money so that I can at least receive the medication that I desperately need to be somewhat comfortable, I would appreciate it.
In addition to all that has been happening, I also recently got into a huge car accident. The car accident was so massive that the air bags went off and I was really hurt badly. This stupid huge Yukon truck hit us in the back and then plowed us into the car in front of us. We really had no place to go because it happened on a roadway that was over water and if we went to the left, we would have hit the cement guardrail and therefore had no place to go, and if we went to the right we would have went off the overpass and into the water. What makes it worse though is that the YUKON truck took off! Despite all the witness seeing the accident and trying to get the license plate number, he got away. In addition, the car that was in front of us that we hit ended up having no license or insurance. What a day that was.
Between all three cars, our car was the worst perhaps because we were the car in the middle of the sandwich. The whole car had to be totaled because the airbags went off, the car is crumbled with the engine being all twisted, and the hood is in the driver’s seat. The frame of the car is even cracked. They even said on the scene of the accident that the car was “totaled!” It is really horrible.
I was also the one that was hurt the worst perhaps because I am the most fragile and weak. However, there was no treatment that could really be done because with my illness, there are very limited things that can be done. What really stinks though is that my disease makes me extremely hypersensitive so a simple needlestick is like someone sticking a knife through me. So the pain that I am receiving from this accident is astronomical because a normal person would be in tons of pain from it… so you can imagine how much worse I am. In fact, as the days go on, I am feeling worse and worse throughout my body instead of actually getting better. I know it is somewhat normal for this to happen, but my disease doesn’t help this. My disease literally spreads through trauma and will cause complete chaos if something occurs in my body… especially a traumatic even like this!
I am in so much pain from the accident despite all the medications that I am already on. I am already on Methadone, morphine, Dilaudid, Motrin, ketamine, etc. … So if I am in this much pain with all these drugs, I don’t want to feel what I would really be feeling without them. I am surprised my stomach hasn’t exploded yet because I have been living on Motrin, which is something that I am not supposed to really have, as the doctors rather me have Tylenol instead. My ribs ache and they think I severely bruised and fractured my sternum and ribs. My heart hurts and my ribs hurt to breathe as well. As I constantly aspirate and can’t breathe, you can imagine how much pain I am in when I have to go and clear the secretions out of my chest. I just hurt all over.
But hopefully today will be better because I am going for another ketamine coma. Like I said before… ketamine is the only thing that really makes a huge difference. It has the power to stop the pain and even reverse the disease if given a high enough dose. However, I need a dose that is so high that only can be given in Mexico because it isn’t FDA approved. But obviously since I can’t get to Mexico because of the insufficient funds, I have to take what I can get and pray that the lesser amount of ketamine will still make a difference.
Finally, it appears another surgery will be needed for my jaw. A couple of weeks ago I had a severe jaw infection and needed to have surgery on my jaw to remove the infection. During that surgery, the doctor removed not only bone but also three teeth as well because of the infection. However, since I suffer from osteonecrosis, I now found out that I have to undergo another surgery in my jaw ASAP because more of my jaw has died. This really stinks too because more surgery on my jaw means more money out of pocket because it isn’t covered under insurance, which is definitely something we can’t afford. I have been having such difficulty with this jaw surgery ever since I have had it, both with the recovery, pain, eating, etc., that I have already told the doctors that if I knew how bad it was going to be… I would never have had it even though it was so desperately needed.
Everything is just dying and giving out on me in my body…. From organs to bones to everything else. My body has always the ENERGIZER BUNNY who has “kept going and going,” but it no longer can do such a thing. My batteries are dying and they aren’t being recharged.
I desperately need help and help soon. In the meantime, all I can do is hope and pray that I will receive the necessary funds and donations so that I can receive the desperate treatment that I need. I just want my life back and just want my suffering to end already. I can’t take this anymore and I can’t do it much longer either.
On a better note, my parents’ anniversary is approaching. On October 19th, my parents will be celebrating their 39th anniversary. I wish I could do something special for them because they certainly deserve it. I am so fortunate to have such loving parents. Some couples are cute together. Others complete one another. But rarely do you have the privilege of seeing two people who seem so perfectly well suited for one another than my parents. I only wish I could make it better for them. For many years, my parents both have always cherished one another with every passing moment (whether they were good or bad). I only hope that this anniversary brings many more, and turn into endless joy of love, laughter, and peace. I cannot begin to describe how blessed I am to have amazing parents in my life. Seeing true love through them makes my heart happy. I love them both in more ways than I can ever tell them.
I am also counting down the days until Tuesday because my favorite author of all times is releasing her newest book. I just love Sophie Kinsella and she is releasing it then. Too bad she only releases one or two at the most a year. She really writes light, funny, and great reads!!
Well… I really must be going because I am leaving for the hospital. It is just another Wednesday, as Wednesdays are filled with ketamine comas. Fridays are always filled with the colon surgery because they need to desperately clean out my colon because my entire GI system is dead and nothing moves. The doctors are afraid of me going into sepsis or something because the medication and whatever food is in me just sits in me and “rots.” So… I have no other choice but to be cleaned out every Friday. In fact, when I go into the OR for the surgery, the doctor always makes me state my name and why I am there and what type of procedure I am having. I always tell him “housekeeping” because that is basically what we are doing!! We are cleaning me up!
Well… thanks again for all your support and encouragement. If it weren’t for your support, I would have never made it this far. Please continue to pray for me. If you have any ideas in how to raise funds, please don’t hesitate to Facebook me or email me at Femirsky@gmail.com.
Thanks again for everything.
October 3, 2014
I just wanted to write an update since I haven’t written in awhile. It is honestly getting harder and harder to write these blogs and that is why I don’t write as frequently as I would have liked. I am really deteriorating fast and trying to hold on, but to be honest… it is getting to be impossible.
Any activity that utilizes energy is getting to be an impossible task. It really scares me and upsets me because I was never like this. I was the person to always push… push…. And push more. But I finally have gotten to the point where my body is just “done” and can’t be pushed anymore. It is as if my body finally ran out of batteries. I always thought I would be the “Energizer Bunny” that kept going and going and going. But unfortunately, my batteries are depleted and I can’t get them to get recharged. I never thought it would get this far.
I never thought I would get to the point where I am too tired and weak to do anything. Even the simplest task of making dinner, which is something that I loved to do is basically impossible to do anymore. Even typing my blogs is getting impossible. I can’t even give my mom her injections anymore for her multiple sclerosis. I was the one who every day gave her an injection to combat her MS, but I am getting to weak to do even that. Everything that I was and did… this disease has taken from me. It is so unfair. Yet, I am still hoping that this will still turnaround and I will be able to be “helped” and be able to resume a normal life. I am still hoping to become that doctor that I was hoping to be since I was a little girl so that I can help others.
I would never think that this disease could have taken so much from me. Once an "A " student who loved school, was involved in many extracurricular activities, was a competitive figure skater and violinist, enjoyed spending time with family and friends, I have spent the last couple of years incapacitated, paralyzed, and unable to sit, walk, or even eat. This disease is excruciatingly painful all throughout my body 24/7. It is like being electrocuted or stabbed, as well as having flaming hot gasoline being poured on me. RSD is characterized by: continuous sharp, stabbing & burning pain; extreme sensitivity to touch; severe headaches; painful skin ulcers; intense muscle spams; softening of bones; dystonia; skin temperature & color changes; hair/nail growth changes; muscle atrophy; vascular & Autonomic dysfunction; sensitivity to lights & sounds and paralysis. The slightest touch, even the caress of a loved one, the kiss from a parent, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain it will bring tears to my eyes.
I also have severe autonomic dysfunction and severe Gastroparesis, as my small and large intestines, stomach, and esophagus are all paralyzed and I cannot swallow. Gastroparesis interferes with digestion, causes nausea and vomiting, and causes problems with blood sugar levels and nutrition; I cannot keep any food or liquids in me, and I vomit constantly. Doctors tried TPN on me and other ways of feeding me, but they all failed. My body is just shutting down. As a result, I have dwindled down to weighing only in the 60 plus pound range and having a BMI of about 10.8. In addition, it is causing me to aspirate into my lungs, which is leading to difficulty breathing and can cause life-threatening pneumonia.
The pain I feel is indescribable and all attempted treatments have not even come close to relieving all my suffering. I have seen many, many doctors, undergone numerous painful tests and procedures, has been prescribed over 50 medications, and has been hospitalized frequently including being intubated and on a ventilator. As a result I now need to have surgery to remove my colon (a complete colectomy), as well as a multivisceral organ transplant, which will encompass receiving a totally new digestive system (new stomach, small and large intestines, pancreas, and liver). Doctors do not know how I am currently living with all that is happening to me, but I am still pushing on and hoping for a day that I am 'cured' and able to live my life to the fullest!
Yet, I still love life and want to get better. I am still hoping that through the efforts of others that I will be able to get well. I don’t want to be sick. But unfortunately, I am deteriorating and getting sicker at a markedly fast rate. I hate knowing that in order to get better, it depends on other people because we can no longer afford the very lifesaving treatment that I need to survive. I wish I were independent and only had to count on myself. But unfortunately, my life depends on the help others. So I am hoping and pleading that you help me. I don’t want to be sick and I have so much to offer the world. I can’t take the suffering anymore. The toll this illness has taken on my physically, medically, psychologically, emotionally, etc. is unimaginable. I desperately need help and in order for that to happen I really need help from everyone to make that happen because unfortunately we cannot afford the very lifesaving treatment that I need.
It’s a shame how money dictates so much of how the world functions. But unfortunately it does. So unless I raise some money through donations and fundraising, I don’t see how I will be able to get the very imperative treatment that I desperately need. If you can please help me in any shape or form, I would really appreciate it. No donation or help is ever too small and all is extremely appreciated. Please help me get the treatment that I need because I am not going to make it much longer. I am literally hanging on by a thread. I would be forever grateful for any contribution that you can make.
Unfortunately, we had to cancel this past trip to Cleveland Clinic that we had scheduled because of lack of funds. It was a very important trip too, but since we were unable to come up with the needed funds and no one is going to do anything for “free,” we had no choice but to cancel the trip.
As a result, we now had to reschedule everything and it is all planned out what is needed to occur. It is very imperative that I get to these appointments because I will literally die without them. The doctors are even afraid that I won’t even make it until then, but they don’t know me… I am going to hold on and make it. (Click SHOW ALL to read more)
We are scheduled to go to Cleveland Clinic during the last week of November, which is also the week of Thanksgiving. Although it is a little while off, I am hoping that it will give us enough time to raise enough money because we are definitely going to need it. The upcoming medical treatments and trips are going to be very expensive and therefore, I am hoping that I will be able to use the next few weeks to raise enough money to help us out so that this all can happen.
I will be seeing so many doctors when I go down that week. Among them includes an endocrinologist because I need a bone infusion that cannot be given to me in New York as well as one of the most knowledgeable specialists in my neurological disease. I am also seeing the cardiologist because my heart is not doing well and I will also be getting all the final clearances done so that I will be able to have all the necessary surgeries that I need in the following weeks.
I need to see the Endocrinologist at the Cleveland Clinic because my bones are so very weak and I can easily get a life-threatening fracture. I desperately need a specific bone infusion that cannot be done in New York and the specialist in Cleveland can only do it.
I also need to see the specialist in my neurological disease because there are VERY few specialists that are very knowledgeable about my neurological disease. A lot of doctors may claim that they know “something” about it, but there are only about 3 doctors in the world that actually are fully knowledgeable in my neurological disease and actually doing research on it. This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it. However, the doctor that I am seeing in Cleveland is one of the most knowledgeable doctors in the world, as he has published and spoke about my disease in depth. Since I am one of the worst cases that have ever been seen, it is extremely imperative that I seek his expertise.
In fact, the doctor in Cleveland is actually not seeing patients because he is considered “retired,” but we are very fortunate that he will see me because he continues to see past patients and since I have seen him many years ago, he will see me again. There is not many treatments or stuff known about my illness and not only is it important to seek his expertise because I am suffering from this illness in itself, but I am also going to be undergoing mega surgery and my illness spreads through trauma, which includes surgery. As a result, it is very important to seek his expertise because since this illness does spread through trauma and surgery, we need to know best how to “control” this illness and best how to help me during these upcoming surgeries. After all, this illness spreads like a weed and it is the most painful disease that you can imagine. In fact, it is the most painful disease in medicine, as it ranks higher than Natural Childbirth, Amputation, Cancer, etc. on the McGill Pain Index.
I suffer from pain 24/7 and never get a break from it. The only time that I can say that I am at “peace” from this illness is when I am under ketamine, which is why I really need to get to Mexico so that I can undergo that radical ketamine procedure that will reverse the disease and put the disease officially in remission. During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. The Ketamine Coma shows great promise as a treatment for severe RSD. However, even though I do get ketamine here in the United States, the amount of ketamine that I need and is required for this procedure is not FDA approved and can only be attained in Mexico. However, this procedure is extremely costly, as it will cost over $100,000 and we cannot afford it without your help.
In addition, I will also see one of the top cardiologists when I go to Cleveland as well. My heart is not doing well and it was discovered that I have dense calcium calcifications in the coronary artery. I will be undergoing heart surgery to put ports and lines in because the doctors need central and emergency access into me for the surgery to remove the colon as well as because I am doing so poorly, but the doctors are also concerned that I will need further surgeries now because of these dense calcifications in the coronary artery.
The cardiologist that I will be seeing is really supposed to be the best. Fifteen of the top 50 cardiologists are working at Cleveland Clinic and ranking in the top 15 is the cardiologist I will be seeing. I will be seeing the legendary Dr. Irving Franco, who joined and worked at the institution since 1971. He trained under the legendary Sones and subsequently trained two generations of the Clinic’s cardiologists himself. Sones is considered the father of “coronary angiography” and credited with one of the most important discoveries in the history of cardiology, as he discovered a way to form a road map of the heart for medicine and surgery. Sones’ innovation made possible, for the first time, accurate diagnosis of coronary disease and set the stage for the modern era of cardiology and cardiac surgery.
So I am really hoping that Dr. Franco will be able to help me because I am a very difficult case. With my autonomic dysfunction, my poor bloods, etc. my heart is suffering a lot. Not only will I need heart surgery to put the lines and ports in at the very least, but heart disease and every member of my dad’s family has had a heart attack and open heart surgery. Thank goodness my dad has been the only one so far in his family who has not had a heart attack or open-heart surgery, but it does run in his family. In fact, his younger brother just got out of the hospital this past week from a heart attack and quadruple bypass.
I will also be undergoing medical clearances so that we can come back 2 weeks later to have the necessary surgeries that I will be having. However, I am fortunate that the doctors are going to allow me and get me home for Thanksgiving. I was very fearful that I wouldn’t be home for Thanksgiving because I really wanted to spend it with my mom because Thanksgiving is family time. Plus, with the new upcoming surgeries, I will be missing the holidays, which includes Christmas, Chanukah, and the New Year.
So the even though I am going to Cleveland Clinic in November and will have many appointments, the doctors promised that I would be able to go home for Thanksgiving. Therefore, we are scheduled to leave Cleveland to go home on the actual day of Thanksgiving. There is only 1 flight out the entire day and we are on it. So at least we will be home for some turkey dinner. The doctors feel that with everything that I am going through that it would be an excellent idea to have me home for Thanksgiving and be able to celebrate it as a “family!” (Click SHOW ALL to read more)
We will get to stay home for only a little bit because we are scheduled to return to Cleveland on December 7th. I will be undergoing surgery on the very next day to put the ports and lines into my heart. The doctors need to do this because not only do they need central access and emergency access to me when I have the surgery, but they also need a way to give me TPN.
The surgery to remove the colon is very intensive and the recovery will be very hard on me. Therefore, they want me as strong as possible. I am so very ill right now that it is extremely dangerous to undergo any type of surgery let alone a very complicated and dangerous surgery to remove the colon. So the doctors are going to be giving me 14 days of TPN before removing the colon.
Even though TPN hasn’t worked on me before because I am extremely hypersensitive and I can’t take anything “foreign” in my body, they are going to try to keep me as comfortable as possible by giving me pain medication as well as keeping me a ketamine drip. Hopefully through all these medications and the ketamine, I will be able to tolerate it because removing the colon is going to be extremely hard on me.
I am then scheduled to remove the colon on December 23rd. It is going to be a very long day when I have that surgery. My mom won’t be there for the surgery, but my dad will be there. I am very scared, but it is something that desperately has to be done. My colon has to come out because it is ‘dead’ and toxins are spilling into my bloodstream and going into my organs. I am literally becoming intoxicated and poisoned because of this. If the colon is not removed, I will literally die.
I will need a multivisceral transplant, which incorporates getting a new small and large intestine, stomach, pancreas, and liver, but it is all dependent on how bad the small intestine is when they go into me and remove the colon. If the small intestine is very badly affected, it will mean that I will need this transplant faster. It is the most dangerous transplant that you can have and only 6 hospitals in the country actually perform this transplant.
I won’t be able to go home until after the New Year. I am a little upset that I will be missing the holidays and won’t be able to see home for so long, but at least I will be starting the New Year as a “new person!” Helpfully I will be able to start the New Year as a HEALTHY person and brand new person! I just hope that nothing bad happens during any of this time because I don’t want to ruin the holidays for my family.
Well… that appears to be the schedule of what is going to be happening. It is going to be a very difficult time until we see 2015. But hopefully it will all be worth it.
I am just scared because I don’t know how I am going to last all this time though in Cleveland. We are literally going to be in Cleveland at least 5 weeks when we go back after Thanksgiving. I don’t know how we are going to be able to afford this because we dad won’t be able to work because he will be with me and we cant even afford it now with him working. That is why I am hoping that these next few weeks will hopefully bring in some much needed donations and hopefully I will find a way of raising the money that I need so that I can receive this life saving treatment. So like I said before, if you can please help me in any shape or form, I would really appreciate it. Any help would really go a long way!
In the meantime, I really must hang on. I am really not doing well and in fact, the doctors have really increased my meds because they are not helping or holding me anymore. In addition, the amount of times that I have the ketamine comas/infusions is being increased as well. I usually have them every other week in addition to taking ketamine at home. However, now that I am deteriorating and nothing is really working, they are now going to give me the ketamine infusions/coma every week. Thank goodness because at least I don’t suffer when I am under the ketamine.
I am also still continuing the weekly surgeries for my intestines. I have to go for “cleanings” of my intestines because since nothing really passes through my colon, it literally stays in my colon and rots. It can easily perforate my colon and cause me sepsis. Never a dull moment. But not only does it help me medically and help me “buy” time because without these cleanings I can literally die, it also makes me more comfortable as well. I really look forward to Fridays and having this surgery because it really makes a huge difference in how I feel.
I don’t know why but besides getting so weak, I am even having a very difficult time eating… even more difficult than ever. I constantly feel something is stuck in my throat and nothing goes down. Even the littlest things that I used to be able to get down like the ice-pops and egg whites and ice cream are getting to be impossible to get down. To be honest, the only thing that feels somewhat ok or better than other things is gummy worms. I know… sounds weird, right?
I can’t believe that it is already October and the holidays are basically around the corner. I think that I heard that Christmas is less than 100 days away. Gosh… I hope it isn’t going to be a bad winter like it was last year. I can’t take the cold.
This month is Halloween, which used to be one of my favorite holidays. I used to love cutting open the pumpkins, decorating the house, and giving out the candy to the kids. However, as I got sicker and sicker the “fun” of this holiday kinda disappeared. I used to deck my house out with all the decorations and stuff, but nowadays I don’t really decorate. I only cut open the pumpkins because I make the seeds to eat for my family because what would Halloween be without pumpkin seeds? No pumpkin seeds taste the same as when you get them fresh out of the pumpkin. It is like apples… no apple tastes the same as when you freshly pick them from the tree. So I bought a pumpkin that really caught my eye because it has all this stuff all over it. I thought it looked really cool so I bought it. Maybe when I get better next year my love for decorating and celebrating the holidays will come back
So… I guess that sums everything up. I will write more when I know more. My parents’ anniversary is approaching quickly, as their anniversary is October 19th. I only wish I could get them a present or send them out to dinner, but unfortunately with everything happening, I can’t. They deserve so much. They have been married for 39 years. I am glad to call them both my parents and I only wish I have “love” like they do some day. I cannot begin to describe how blessed I am to have such amazing parents in my life.
Well… I am going to get going. Thanks for keeping me in your prayers and for all your encouragement and support.
September 26, 2014
Let me warn you ahead of time that this email is very filled with lots of info because there has been and is so much going on. I am really not doing well and with everything happening, my head is literally spinning. My head is spinning so fast that I am surprised it has spun off my shoulders like a propeller.
I am really deteriorating and need desperate help. Knowing how sick I am, how sick I am getting and how I don’t have very long to go… it really bothers me to know that I should actually be in Cleveland right now getting the help that I need to help get me out of my suffering and to help put me on the track to getting better and living a long, healthy, and normal life. Yet, unfortunately, I am here suffering and hoping that I will make it until my next appointment at the Cleveland Clinic comes.
It really hurts me that I couldn’t go to the Cleveland Clinic this week because I am a ticking time bomb that has officially detonated and it is only a matter of time before I explode. However, unfortunately we didn’t have the funds available to be able to go. It is a sham how the world relies on money and no one does nothing for free. My life is literally at stake, but since we didn’t have the money it was a “no go” for us.
I tried so hard to raise the money so that we could go because I needed to get there so badly. I hated to sound like a “beggar” because I never was. Yet, I don’t want to die and therefore, I am basically out of options. I really had no other choice but to actually plead for help. Yet, despite all my pleading and ‘begging,’ we unfortunately didn’t get the funds needed so that I could get to Cleveland.
We really needed to go because I am getting sicker by the day. The doctors don’t honestly know how much longer I can exist this way and to tell you the truth… I don’t know how much longer either. I am barely hanging on. I am so tired. I am so tired of all the pain and suffering. I am so emotionally, physically, and psychologically exhausted. Sometimes I wish I could just close my eyes and close them forever because I am just so tired… tired of fighting.
Despite my attempts to get to Cleveland, I was unable to go and therefore, I had to reschedule all my appointments. These appointments were extremely important also because they needed to occur so that I could have the surgeries that I need. I need to have heart surgery to put ports and lines in, which includes a central line so that they can have emergency access into me for the surgeries and so that they can try to give me TPN. I need to have my colon removed because it is causing me to become intoxicated. The colon is literally spilling poisons into the bloodstream, which are intoxicating all my organs and shutting down my entire body. I also finally will need the multivisceral transplant, which includes getting a new stomach, small and large intestine, pancreas, and liver. So it was very important to get to Cleveland this week so that I could get all the necessary appointments out of the way so that I could get all these necessary surgeries done to save my life. I also needed to get a bone infusion because my bones are extremely weak and the doctors are worried about me getting a life-threatening fracture. So it was also important to see the endocrinologist at this time so that I will be able to get this special infusion because I cannot get it in New York. ( Click SHOW ALL to read on)
Yet, now that we were unable to go to Cleveland Clinic, we had to reschedule all my appointments to a later date. I am only praying that this later date will work out. I only hope and pray that by the time the date arises, we will have the necessary funds. After all, we cannot cancel again. The surgeries that I am having are massive surgeries that incorporate a lot of planning, scheduling, and a huge team effort throughout the entire hospital because many specialists are needed to be on my case and scrub in on the surgeries. So essentially, I am taking up a lot time of the doctors there and we aren’t just talking about one doctor either. So, I was already told that if I cancel again that they don’t know if they will be able to follow through and do the surgery because they can’t keep making plans and then canceling them. I can’t blame them for how they are feeling because I am taking up so much time and I am taking up so much space from doctors’ schedules that could be given to other patients, but I really need help too.
I just hate that I don’t have the money to help myself. Now I know how a dog feels when he is shown a bone and how he is salivating and wanting it so much as he watches it being swung back and forth right in front of his nose and then he is tricked and not given it.
I can’t afford to miss these appointments again. The doctors don’t even know how I am going to be make it that long because I am NOT in the ‘greatest’ shape at all. I am literally walking a tight rope and the only way that it is staying up is by hanging on by a thread. Well, that thread is ready to break, and I just hope that it doesn’t break before I get to the off of it and too the other side. I am really running out of time.
Like I said before, I can’t miss these appointments again because not only is it crucial to my health and I can’t survive without them, but the doctors will not continue to care for me and proceed with all the necessary treatments that desperately need in order to save my life. That is why I am ‘begging’ and pleading to please help me raise the money needed to have all this done. I really need so much help from as many people as possible. If you can please help me out in any way possible… please let me know. I can be reached through email at Femirsky@gmail.com or you can even send me a comment through this. Any help whatsoever is much appreciative. Please help me because I don’t want to die and this is basically my last hope!
Well, if all goes according to plan, I have all the new dates for my upcoming surgeries. The task now is just to hold on and make it until then, as well as to raise the money that I will need in order to go through with them. It just stinks because now I am forced to miss all the holidays. It is a shame that I will have to miss the holidays and spend them all in the hospital because I won’t be able to be with my mom during any of them when holiday time means “family” time. Unfortunately we don’t have the finances for my mom to come to Cleveland with us and therefore, my dad is the one who will be taking me while my mom remains at home. After all, she has to watch the business, house, and animals. Just because we will be in Cleveland, my mom will be having her own troubles and struggles because she will be all alone trying to run the business so that it will survive until my dad gets back and so that some money can be made to pay the bills. We don’t have money to board the animals at the vet and my mom has to take care of paying the bills that come into both the house and office.
But I would have really loved to be with my mom during the holidays. Now it appears though that Thanksgiving, Chanukah, Christmas, and New Years will all be spent in Cleveland. Thank goodness for Facetime because it appears that will be closest I will get to see my mom for the holidays. I guess my family will also lose out on my famous cooking, which I always do on every holiday.
As of right now, I am scheduled to go to Cleveland November 12th. That is the first available appointment that I can get for the specialist that is known for my neurological disease. My neurological disease and autonomic condition is extremely rare and complex that not many doctors are knowledgeable about it. In fact, there are only about 3 doctors in the country who are really “known” to know about my condition, and the one that I am seeing at the Cleveland Clinic is one of them. They have written papers on my illness and everything. In fact, these doctors are so well known that it is impossible to get an appointment with them. They have like a 2-year wait (no joke). So knowing that I have one of the worst cases in the world for my illness and how badly I am doing and how it is spreading, it is imperative that I seek the expertise of a doctor who is very familiar with my condition. In fact, I actually have seen this doctor before and thank goodness I have because this doctor has since “retired” and will only see “past” patients that he has seen.
I am also scheduled at that time to see the endocrinologist. It is very important to see her because I have to undergo a bone infusion because of how weak my bones are. The doctors are afraid I am going to get a life threatening reaction and unfortunately the infusion that I need cannot be given in New York. I also have to see the cardiologist, as it was discovered that on top of everything else that is happening with me, I now have dense calcium calcifications in my coronary artery. This is extremely dangerous because it can easily cause me a heart attack. If you factor in all the other components that I have such as the bad bloods, arrhythmia, bradycardia, autonomic dysfunction, etc. I am a heart attack waiting to happen.
I will only have to stay there for about 3 days for all these appointments, but I will then have to return back to Cleveland Clinic during the last week of November, which is also the week of Thanksgiving. During that time, I will be undergoing all the necessary and final testing that I will need for the upcoming massive surgery to remove the colon. I will need a lot of final testing, which includes getting a special type of stress test because the doctors need to know how my body will react to everything because this surgery is extremely massive and will be putting a lot of pressure on my entire body. I would have had this stress test done already, but when I went to have it done the last time we were in Cleveland, we had to stop it because I was considered “too small” to undergo the test. I didn’t weigh enough and they thought it would be too dangerous to be injected with all the IV dyes needed to do the test. So we had to reschedule it to a later date, which is now, and it has to be a different kind of test. (Click SHOW ALL to read on)
I am still not counting Thanksgiving out though. I am trying everything to make it home for the holiday… even if it means that I fly on that actual day. There is actually one flight going out that day and I plan on being on it.
Hopefully will be able to make it home for the holiday because I will then have to return to Cleveland then following week to start all the surgeries. I will be having all the lines and ports placed, which includes the central line. A central line can be used to give treatments such as chemotherapy, blood transfusions, antibiotics, intravenous (IV) fluids and liquid food if unable to eat. It can also be used to take samples of blood for testing, which means not having to be continuously stuck each time you need blood drawn.
This surgery will be very intense because not only do I have to have tubes and ports placed in me and they have to work on my heart, but it will also stir up my autonomic dysfunction and disease because any traumatic event that happens to my body will do that. I am extremely hypersensitive and my disease is known to spread through surgeries and trauma. In addition, as I will have the ports and lines coming out of me afterwards, my body will also have to get used to that as well, which will be very difficult considering how hypersensitive I am.
To help deal with the entire surgery and the central line afterwards, they will be giving me lots of medication including ketamine. I was hoping to be able to possibly come home after I had this surgery and before I had the huge surgery to take my colon out because it will be another 14 days until that will take place, but the doctors are very skeptical about that happening. They feel that this won’t be an option because they don’t think I will be able to get off the ketamine and pain meds to be able to leave the hospital. In addition, they are hesitant to let me go home because it is only for a short period of time because no matter what the surgery to remove the colon will be 14 days after and they are scared that I will get sick or catch something with all the traveling and with being around other people. That would be the last thing that we would need at this point.
I still have to decide whether I want the “Hickman,” which is a tube that is inserted into one of the veins of the heart through the neck or under the collar bone, or a line known as a “PICC line” which is a tube that is inserted that into a vein of the heart by going through a peripheral vein such as the upper arm.
This surgery will be very intense for me.
But as I stated before, I am having the colon removed 14 days after the surgery that was done to put in the ports. Therefore, that means that I will be having my colon removed on December 23rd. I could have had the operation the following day, but I wanted to make sure I was up enough to be able to celebrate Christmas and everything. The doctors are not looking for me to per se gain weight on the TPN or reach a certain number before they do the operation. They just want 14 days of the TPN and they are doing the operation no matter what. In fact, the doctors think that gaining weight will be extremely difficult for me because I have to deal with the refeeding syndrome, which is extremely dangerous and they also feel that the chances of me getting even into the 90s is impossible. So they just want to do the TPN for 14 days to try to get me to be a little stronger so that I will be able to make it through the operation and to help me recover especially since it is such a massive and dangerous operation.
Depending on this removal of the colon will determine how fast and urgently I will have the transplant. It all depends on how badly the small intestines are affected. But we won’t know that until we remove the colon.
So I will be in Cleveland for all the holidays including the New Year. From the time I have the surgery to put the ports in to the time I will be allowed home, it will be about 5 weeks. So I will definitely need as much help as possible with raising funds because there is no way that we can afford to go through with all this by ourselves. That is why I am hoping and praying that others will be kind enough to find a way to help me out as much as possible. Like I said before… any help whatsoever would be much appreciated.
It is definitely going to be weird spending all the holidays including Christmas and New Years in the hospital. But the doctors say that hopefully Santa will be bringing me the best gift of them all… a new lease on life. After all, the huge surgery is right before Christmas. So hopefully I will be starting 2015 as a brand new and healthy person. I really hope that all will work out. It would really be amazing if that happens because I have been sick for so long that it would be a dream come true to be “normal” again and to regain a life again.
In the meantime though, I am still not doing so well in regards to the previous surgery that I had on my jaw and teeth. I am still in a ton of pain and still having a harder time than ever eating and drinking. If I thought I couldn’t eat or drink before because of my gastroparesis, it is literally impossible now. Even the very few things that I could have before such as the ice pops and eggs are giving me problems. The only thing that really feels somewhat ok going down are gummy worms. I know it sounds weird but that is basically the ONLY thing that feels good going down.
It really worries me though because I went to the surgeon and it appears that I am not “healing” and recovering like I should be. It really scares me because if I can’t heal or recover from a surgery like this, how am I supposed to heal and recover from a huge and massive surgery like I am having on my colon and with the transplant?
I was thinking about asking the doctors if they think hyperbaric oxygen might be an option that would help me. I know that it helps people “heal” and therefore, I was wondering if possibly they could do that on me and it would help after the surgery. I don’t even know if the Cleveland Clinic does it, but I can’t imagine them not doing it especially since it is so well known for burns and Cleveland Clinic is such a top hospital in the country. So I will ask and find out. Can hurt to ask.
So I have a huge task ahead of me. I really gotta hang in there so that I can be strong enough to undergo these huge surgeries. Hopefully my weekly surgeries to “clean out” my intestines will also buy me time because without that happening, I am a goner. I have to worry about those toxins spilling into my body and shutting down my organs and I also have to worry about my colon rupturing because nothing passes through. I can easily go into sepsis because everything just sits in my colon and rots.
Well… I guess that sums everything up that is taking place. Not to sound repetitious but I would really appreciate it if you can lease help me. Any help whatsoever is much appreciated. Please say a prayer for me in the meantime! Until next time.
September 20, 2014
What a week this has been. I figured that I would write and inform you all that is happening because there is so much happening lately.
I really don’t know honestly how much more my little body can take of this. I am so physically, medically, and psychologically drained. I am just so tired and barely hanging on. I am supposed to be leaving on Tuesday for Cleveland Clinic, but to be honest with you... I really don’t feel strong enough to go. Between this illness really getting worse and taking over, me severely deteriorating, and the recent surgery I had to remove part of my jaw and teeth, I am just so weak and tired to travel. In addition, we don’t have the funds to even go. But, I do know how important it is that I do get to Cleveland Clinic because I am really a time bomb that has been detonated and I am really running out of time. If something isn’t done fast, I am definitely not going to make it much longer. That is why the doctors at Cleveland Clinic want me to come ASAP because they want me to get the show on the road because they know that I am basically hanging on by a thread. After all, my GI tract is paralyzed, I am only weighing in the 60s, I am being intoxicated and poisoned by stuff entering my bloodstream from my colon and GI system, etc. I desperately need help and help now. But like I said before… I need the funds to do this as well and unfortunately, we don’t have the funds at this time to even go. I am hoping though that in the next few days that I will be able to come up with the money through donations because it is so important that I get there. So if you can please spread the word that HELP is needed, I would really appreciate it.
Going to Cleveland is really up in the air for other reasons as well. Not only do we not have the funds, but I am still also suffering from the surgery that I previously had on my jaw and teeth. I am in excruciating pain from it still and to tell you the truth… if I knew it was going to be this bad, I probably wouldn’t have gone through with it even though I really had no other choice because I had a massive infection that had to be taken out.
The pain is so unbearable that I can’t eat or drink anything. The pain is so much worse for me too because of my illness, as it magnifies everything. I am so hypersensitive because of my illness and therefore, a simple needle stick is like someone putting a knife through me. So you can just imagine what having someone cut you feels like and having part of your jaw removed would feel like.
I can’t even eat or drink on one side because I had surgery on both sides. Even the littlest things are impossible. Between my GI system and my mouth… eating and drinking is a big challenge… bigger than you know. I can’t even have the few things that I was living on before like the egg whites and the ice-pops. I need to have the ice-pops especially too because my heart meds are in them and my heart isn’t doing well as it is. I really can’t afford also not to eat because of my weight. I weigh so little already that even losing an ounce is extremely dangerous and life threatening. (Click SHOW ALL to read on)
In addition, dad hasn't been well and therefore, I am also worried about my dad and I don’t know if he is well enough and able to go either. He will have to work so hard when we go there because I get really sick from the traveling and everything and between me and the luggage and everything else… I don’t know if he is “up” to it. I don’t want to get him sicker either. He has had that fever and shakes and everything and that's literally scaring the crap out of me. He never gets sick so for him to be like this for so long it's scaring me. We took him to the urgicenter on Sunday, but they place honestly sucks. I would never recommend that place. They gave him an antibiotic but even I said that med stunk. Luckily when I went for my ketamine my doc gave him something else and since he changed to that he has been making a full recovery. But that has only been the last two days or so. Mind u that he never once slows down or anything when he was sick with fever and all. He still worked harder than ever.
Finally, I don’t know if I should go because it would mean that I would be missing my “cleaning out” surgery on my colon next week and since I didn’t have it today, it would mean that I would be missing 2 weeks of it. To go 3 weeks without having it done, it will really not only be extremely uncomfortable but it will also jeopardize my health.
I am really deteriorating and the one thing that was “buying” me time was canceled on me today. I can’t begin to tell you how upset I am over this because not only was it “buying” me time, but it was also a procedure that was the only thing that made me more comfortable. You can’t believe the suffering that I feel with the paralyzed GI system. Plus, the doctors are so worried that I am going to have Sepsis or something because my colon is going to rupture because nothing passes through. As a result, everything just sits in my GI system and rots… whether it is meds, food, etc. My entire GI system is basically paralyzed and ‘dead!’ That is why I need my colon removed and a multivisceral transplant too, which incorporates receiving a new stomach, small and large intestine, pancreas, and liver. Nothing and I mean nothing is moving through and it is through this procedure only that things actually move out of me. I am literally being poisoned by the stuff that is staying and rotting in my GI system. It is shutting down all my organs and I really need help. However, until I get this operation to remove the colon and the transplant, this “cleaning” that I have is the only thing that is “buying” me time until I have it done. Without this procedure being done, I would definitely not make it much longer.
Yet, I still don’t honestly know what to do now because I was canceled today for my procedure to be “cleaned out.” Not only does it cause problems with making me feel worse and cause problems with jeopardizing my health, but it also causes problems because I don’t know if I should be going to Cleveland now on Tuesday. It was really important to have this procedure today because if I went to Cleveland Clinic next week, I would be more than likely missing the “cleaning” next week. However, now that I haven’t had it done this week, there is really no way that I can go 2 weeks with not having it done. I will not only be suffering like you will never believe but all those toxins building up will really be no good and can really cause HUGE problems. It can also cause my intestines and colon to perorate because the colon and intestines are so distended and nothing moves through unless I have this procedure.
In addition, I also needed to go for this procedure today because I needed to talk to my gastro doc about the upcoming trip. I also have been suffering from some new problems lately and I wanted to see what was going on. But now that I haven’t had the opportunity to go for this procedure, I don’t know what to do.
I honestly can’t believe that the doctor canceled me because he knew how important this procedure was to me and how much I needed it. He knew that I especially needed it because not only was it “buying” me time but it was also needed because I was going to Cleveland in the upcoming week. I am so mad because the doc lied to me too. They called me up yesterday saying how they needed my space because he was overbooked. Meanwhile I needed that cleaning desperately because that's the only thing buying me time and everything. So I explained get all to the girl and how I'm going to Cleveland and everything and she said she would get back to me about putting me back on the schedule. Well they got back and she said that they aren't doing procedures there anymore because they were suspended after what happened with his. Rivers. I had a feeling she was lying because earlier that day I called and made all my appointments for October.
Therefore, I called the office today and found out that I was indeed right. I was cancelled and the doctor is still doing procedures and everything. I am so upset because he knew how important this was too. I then called my doctor later on and left a message with the girl to have him call me back because I wanted to discuss some of what happened with him as well as talk to him about other things such as how I am not feeling well and all those questions regarding Cleveland Clinic. I also wanted to find out perhaps if he could do the procedure on me maybe on Monday since I am supposed to be leaving on Tuesday. But, like always… the doctor never called me back.
So now I don’t know what to do. If I could change GI doctors, I probably would. But unfortunately, even though NY has plenty of GI doctors, there are not many GI doctors who are familiar with my illness and willing to take on my case. So I really don’t a big list to choose from. I think I exhausted every GI doc that can possibly exist. The only good GI doctors honestly are out-of-state and even though I have excellent doctors out-of-state such as in Cleveland Clinic, I still need to have a doctor in New York so that if something happens at home, there is still someone locally to take care of me.
Who even knows if going to Cleveland Clinic and having my colon removed and having the transplant is the right thing to do. It is such a massive operation that is extremely dangerous. I went to have ketamine the other day and when I was in the coma, my dad was talking to the doctor about the upcoming surgery and such. My doctor had told my dad that if I go for this surgery at the Cleveland Clinic that I am going to be committing “medical suicide” because it is so risky and dangerous. He said that I would never survive the surgery. Yet, what other choice do I have? I have to do something because otherwise I am definitely going to die. (Click SHOW ALL to read on)
Ideally I really need to get to Mexico to have that ketamine coma that is not FDA approved in the United States. That would be the BEST option of them all. It is the one thing that has been shown to “cure” the illness. Even though it sounds really scary and it is also risky, it is really the best thing to do. However, there is no way that I can come up with the $100,000 to pay for the coma and therefore, I cannot have it. I have tried many way to come up with the funds for years and all I have been doing is not really getting anywhere while I am deteriorating and dying. But it really stinks because money means more than a person’s life. It is a shame that because I can’t come up with the needed funds, I can’t get the procedure that can save my life. So we can't just sit back and do nothing since I can’t afford to go to Mexico because I'll die literally. The only option I have is to have the colon removed and then the transplant. U know?
I really don’t know honestly if it pays to go at this time to Cleveland Clinic or if I should put it off for a bit considering everything that is happening. I really want to go because I am going to be seeing one doc who is famous for my neurological disease. There are very few docs (like 3) who are extremely knowledgeable about my neurological illness and the pain and everything, and one of them is at the Cleveland Clinic. He is retired, but he still sees past patients once a week and since I saw him years ago, I am fortunate that he will see me again. I really want to see him because not only am I suffering immensely, but also the surgery that I had on the jaw really spread my illness as well and therefore, I really need more help than ever. In addition, since I can’t get to Mexico to get that ketamine coma, I am hoping perhaps he might have some other magic up his sleeve.
However, I also have other appointments scheduled besides seeing him. I am supposed to have a whole week worth of appointments. I have appointments with doctors for pre-surgical testing and such because the transplant team wants that colon out of me ASAP. However, the tests and clearances are only good for 30 days and if the surgery isn’t done within that time, then they are wasted and have to be redone. Since we don’t have the funds now, I don’t know how we are going to be able to have the actual removal of the colon because it would mean that I would have to be there for like 5 weeks and we can’t afford it. So I don’t know if I should waste my time getting all the clearances and everything at this point even though I know that I need this surgery ASAP and they want to do it ASAP.
Ideally, the transplant team wants me to go through the week’s worth of appointments and then have surgery the following week on my heart because I need to have ports and lines placed into me in order to go for the surgery. I also need surgery because of the dense calcium calcifications in my coronary artery. They also want to try to give me TPN to help make me as strong as possible for the surgery because it is a very big surgery and I will need all the help and strength I can have. They then have it planned that 14 days after this surgery, they will then remove the colon. But like I stated before… I don’t have the funds to do all this right now so I don’t know if it is worth seeing all the doctors the week prior.
In addition, I am supposed to be seeing the endocrinologist because I really need a very important bone infusion that they can’t do here. The doctors are extremely afraid that I am going to get a life-threatening fracture. However, due to my jaw surgery and everything, I have to wait about 4 more weeks to have this infusion and therefore, I don’t know if it is worth going to the endocrinologist now or if I should just wait until I can have the bone infusion and do it all at once.
I would do anything to get my life back. This is definitely not the life that I thought that I would have. Never in my wildest dreams did I think my life was going to be like this or turn upside down like it has. I should be independent, a doctor, having a family of my own, etc. However, I am now unable to eat, unable to walk, living with my parents because I can’t really move out and care for myself, unable to work, etc. I live a life that is in constant pain 24/7 and I never get even a brief second of relief. I have no social life and I even have caused so many problems for my entire family, as we are in great financial hardships because of me. We really can’t afford anything. We haven’t been out to dinner or even on a family vacation in years. I can’t even remember when the last time we did because that is how long it has been.
I feel so bad for what I am doing to my parents because they are at the point in their lives that they should be enjoying themselves. Yet, they are stuck taking care of me, have no money to do that ‘enjoyment’, and they are working harder than ever. I am so scared because my dad looks so horrible and is working so hard and everything. Plus with his age... It's freaking me out more because everyone on his side of the family dies early. They have been dying earlier and earlier from heart attacks and my grandpa died when he was 66. My dad is 61 and with him having all this stress and working so hard... He's honestly a heart attack waiting to happen. If something ever happened to him, I would never forgive myself.
So… as you can see so much is happening and everything is chaotic. I don’t know what is happening. All I know is that unless we get some funds… going to Cleveland is definitely not going to be an option. So if you can please help me, I would really appreciate it. Plus… I need help more than ever in receiving the funds because I need to have this operation done ASAP because if I can’t get the “cleaning out” surgery every Friday like I need, I will be intoxicated and end up dying. So… please help me in any way that you can. Any help would be much appreciated… whether it is spreading my website ( www.gofundme.com/FallonMirsky
) or even saying a prayer.
Well… I guess that is about it for now. I am going to rest because I am not doing well. Thanks again for all your wonderful support and encouragement. I will keep you posted as to what happens. Hopefully everything will work out for the better.
September 13, 2014
I just figured that I would write and let you know how the big surgery went and let you know the absolute latest. I don’t know how much I am actually going to be able to say tonight because I am very sick still and not doing well. But I wanted to at least post something on how I am doing.
The surgery itself went very well. However, my body didn’t take it very well and I am having a very difficult time recovering. In fact, the surgery took such an impact on my body that we think that it spread my illness big time, which is definitely something that we were hoping would NOT happen and definitely couldn’t afford to happen. However, it appears our worst fears have come true in the fact that this surgery has actually spread my disease.
I will be honest with you… this surgery was definitely no walk in the park. The surgery was about 6 ½ hours in length and it really was exhausting for not only me but also my entire team. I must say that I did have the best “team” on my case, as my surgeon was absolutely wonderful. He had meetings with everyone in the operating room prior to me being operated on so that everyone was familiar with my case. After all, I am not the ‘typical’ patient and can’t be treated like the ‘typical’ patient. I need special care and I can’t be touched like a regular patient. For example, the doctors have to be extremely careful with the lower portion of my body because my legs are extremely hypersensitive due to my illness. Nothing and I mean nothing can touch them because of the extreme pain.
So the doctor did everything in his power to make sure that I was as comfortable as possible. He posted signs all over my bed that said “don’t touch legs” in order to aware anyone and everyone not to touch my legs because it would really send me through the roof. He also showed everyone my pictures as well because he wanted everyone to understand my illness and I am definitely not an illness that people are familiar with. The doctor made sure that the room was the appropriate temperature since I can’t tolerate extremely cold temperature and the ORs are usually kept at very cold temperatures. He was extremely gentle and caring in everything that was done. Even when the operation was completed, I was taken off the table and placed into a bed that would be brought up to the actual room that I would be in instead of having me transferred into another bed once we got up to the room. I couldn’t have asked for a better surgeon.
But what a surgery it was. It was a very long surgery that was extremely hard on me and now I am having an extremely hard time ‘healing’ and recovering. I was of course put under general anesthesia and since the surgery had to take place on my jaw, mouth, and teeth, I had to be intubated through my nose and down into my lungs that way. So now that I had to be intubated through my nose, I am now continuing to suffer from bloody noses.
The surgery definitely was a long and exhausting surgery. I ended up having part of my jaw removed, 3 teeth extracted, and 11 teeth fixed. However, I had no choice because I was suffering from a massive infection that needed to be taken care of. Besides suffering osteonecrosis, I developed a massive infection due to my entire body shutting down. My colon is completely dead and as a result, it is spilling toxins and poisons into my bloodstream and the poisons are entering my organs and brain and shutting them down. I am being intoxicated and poisoned by these toxins and I really need to have the colon removed ASAP and also to have a multivisceral transplant, which incorporates receiving a new small and large intestine, spleen, pancreas, and liver. However, I first need to have heart surgery to put ports into it so that the surgeons will have emergency access to my body for these operations as well a way to try to give me TPN so that I can try to be made stronger for these operations since they are extremely dangerous and very difficult to heal from. Yet. I ended up developing this infection in the meantime and therefore needed to deal with this massive infection before we could worry about moving further towards the other surgeries. We also learned that I will also most likely need further heart surgery because my coronary artery has dense calcium calcifications in it. So my heart is being blocked as well, which can result in a heart attack or stroke.
But as I stated before, it was first important to deal with this infection because I couldn’t have these other surgeries until this infection was cleared up. We think it developed because of how bad my body is doing in general. It is just an outward appearance and a reflection of what is doing in my heart and body. My body is just shutting down and dying. As the doctors have continuously told me, I definitely need something to happen to me fast because I am at the point where I am rapidly deteriorating and I am going to constantly downfall until we get this problem fixed.
This surgery was torment. When I woke up, I was in such enormous pain. I was put on a IV pain medication of receiving Dilaudid every hour, but even that wasn’t enough. I never felt pain like I was feeling. Little did I know that not only was I feeling so badly, but also I didn’t look like a ‘beauty’ either?
My dad took some pictures of what I looked like after surgery and when I looked at the pictures it looks like I am wearing lipstick and received Botox. There was so much blood on me that it looked like I was wearing lipstick and my lips were so swollen that I looked like I had Botox. It was horrible. (CLICK SHOW ALL TO READ ON)
The hospital had a very hard time managing my case. They had an extremely hard time managing my pain too. For some strange reason, I metabolize drugs so quickly that it’s literally amazing. I take so much drugs (like over 50 pills) that it would easily kill a horse. A grown man weighing 300 pounds probably wouldn’t be ale to tolerate my medication regimen. Yet, I am only weighing in the 60s and I take everything that includes ketamine, dilaudid, methadone, morphine, nucynta, etc. The list goes on and on. Doctors have such a hard time with prescribing medicine for me because by weight, I am so little and should be pediatric size. However, my body metabolizes drugs so fast that it is literally impossible to give me that size dose because it would literally do absolutely nothing for me. Doctors can’t believe how they can’t ‘numb’ me up for surgery and such and that is just one more reason why anything that needs to be done has to be done has to be done under General Anesthesia.
I am really upset that I had to have part of my jaw and teeth taken out. I already feel so ‘ugly’ already. This disease has taken so much from me already. It has taken away my social life, eating, walking, my career, my colon, etc. Now it is even taking away my smile. I already look like an emaciated skeleton and my skin literally sags on my protruding bones because there is no more muscle tone left basically anywhere in my body thanks to this wonderful illness. I can’t believe it is not going after my smile too. I really was fearful I would wake up looking like a Jack O’Lantern. I know that there are implants that can always be done, but when I can’t even afford the medical treatment that I need now, there is no way that I will ever be able to afford implants. Now that I have all this removed from my mouth… my dream and ultimate goal is to have implants done. I would do anything to have my smile back. I feel so inhuman already. I feel like this disease just keeps ripping me apart. What else is it going to take from me?
I really shouldn’t have left the hospital when I did because I honestly wasn’t ready to leave. However, I had surgery in one hospital and I had to leave because I needed to get to another hospital to have surgery today to have my intestines taken care of. After all, I couldn’t miss out on the surgery on my intestines because I needed to have my intestines ‘cleaned out’ because of the poisons that are literally intoxicating my entire body. There really was no question that I had to have this done because since my GI system is dead, I needed to have this procedure, which I have every Friday, as this is the only way I can remove and pass whatever is sitting in my colon. It has to be removed because it is this stuff that is sitting in my intestines that are causing further harm and further spreading the toxins and poisons throughout my body and shutting down my organs and body.
So I spent a few days at the hospital following the surgery on the mouth and jaw, and I was fortunate that my dad stayed with me every minute of it. I was also kept on the same floor that Jennifer Lopez was kept when she gave birth. She rented out the entire floor when she gave birth and now I know why she had that floor. That floor was absolutely gorgeous. It was all carpeted, had a salon, full-length mirrors in the bathroom, and even hair blowers too. I couldn’t honestly believe how nice the floor actually was. It must have been the best floor in the hospital.
Not only was I on the best floor, but also I also really have the absolute best dad in the world. He wouldn’t leave my side for a second. Both my mom and I kept telling him to go downstairs and get something to eat, but he refused to leave my side. He spent literally every minute with me. Who could ask for a better dad?
However, I feel so bad for my dad now because he has gotten sick from spending all that time in the hospital. The room was kept in a frigid condition and he must have gotten sick because of that in addition to the fact that infections are looming big time in hospitals. My dad tried to put towels over the air-conditioner vents to try to warm up the room, but it only did so much. Plus, him sitting over there for the entire time we were up there I am sure didn’t help the situation with him picking up a chill. It was so cold that his ring was basically falling off his hand because his fingers were shrinking because of the cold. Then when he wasn’t eating or drinking anything really to keep his strength up and also not sleeping because he was busy with me… there is no wonder that he got sick.
So now my dad is really sick with a fever and all. He has the chills, his body aches all over, his eyes are bulging, etc. My dad never ever complains that he is sick so for him to do so, it is bad. Yet, he is still not letting any of this get to him because he is still working himself as a horse. He knows that we are leaving hopefully for Cleveland in the week to come (September 23rd) and he knows how desperately we need the money and therefore, he is not even ‘resting’. With being sick and with a fever, he is continuing to work like a horse by working from 4 AM to 7 PM and not even taking a break. I am so scared that something is going to happen to him because it isn’t even where he is ‘well’ now. If anything ever happened to him, I would NEVER forgive myself. He is not only my dad, but also my very best friend. He is my superman. He is everything to me. I definitely would not be where I am today if it wasn’t for him.
But as I was saying before, this operation has not been easy on me. I literally can’t eat or drink anything. I usually can’t eat or drink much anyway except ice cream and egg whites and my medicated ice-pops, but even the very few things that I can usually get “something” down is impossible. I had surgery on both sides of my jaw and therefore, it is impossible to chew or swallow on either side.
We are also having a hard time controlling the bleeding. The incisions just keep bleeding and bleeding. Everytime they stop bleeding, it starts right back up again especially if I eat or drink anything. But I of course can’t afford to lose even an ounce and therefore, I am in a catch 22. I have to eat and drink because of my weight and yet it is so entirely painful and it causes me to bleed even more. Never a dull moment.
I have been in constant touch with the surgeon though about this matter and to control the bleeding the surgeon has me biting on gauze and warm tea bags. It is helping to a point, but then it starts right back up again. I really hope that this gets better soon because it is not only really painful, but I hate seeing the blood that is coming out and it tastes really bad too.
But as I stated before, this surgery was not easy on me and we think that this surgery also spread my illness as well. When I went for surgery today for my intestines, I was getting changed into a hospital gown when I noticed that my legs looked really funny. Last night I noticed my ankles looking a little weird but I didn’t look much into it. However, when I was changing this time, I definitely started to freak out because it was definitely not normal what I was seeing.
I kind of knew instantly what was going on. I knew deep down that it was the disease spreading. But I was hoping that I was wrong. I immediately called in my dad to look at my legs because he was on the other side of the curtain because I was getting ‘undressed’ and into a hospital gown. He didn’t’ like what he saw either. He knew kind of what that meant as well. When we saw the doctor, we showed it to him as well, and he was the third person to confirm the fact that it was the disease spreading, which was something that we couldn’t afford at all to happen. (CLICK SHOW ALL TO READ ON)
I don’t know what we are going to do now that the disease is spreading and getting worse. It is definitely not a good sign that the disease spread the way it did. We instantly called my doctor who takes care of my ‘ketamine’ and he wanted me to come in ASAP. However, with everything happening and with the finances, the earliest that I can see him is Wednesday. Yet, with my illness, every day is crucial and counts. I am only hoping that nothing more disastrous will happen in the next few days. I am only hoping that the ketamine infusion that I will undergo on Wednesday will suppress the illness a bit. I know I can’t expect the ketamine to do miracles and work wonders because the amount that I really need to make an impact can only be attained and done in Mexico because it is not FDA approved, but I am hoping at least it will help and hopefully suppress the spread of whatever amount of the disease happened to spread due to the previous surgery. I have never been so scared because this disease spreads like a weed. Once it gets started, it is so difficult to slow down and stop. It just takes over like you wouldn’t believe and it has taken over my body enough. I literally can’t afford for it to takeover anymore.
So as I was saying, I had surgery today to clean out my intestines today. I was not a very good patient today because they had a difficult time getting an IV in me. I ended up squeezing the doctor’s fingers too tightly and bending them backward because of the pain that was occurring as the anesthesiologist was trying to put the IV in me. Unfortunately, I have had so many IVs already that there is so much scar tissue in the area. Therefore, she had a very hard time putting the IV in and I was not holding still. The doctor had to literally hold my arm while the anesthesiologist tried to get the IV in me. I felt so bad for killing the doctor, but the anesthesiologist was killing me. It was so painful!
I really thought it wasn’t going to be so bad ‘inside’ my intestines especially since I haven’t eaten anything for like 4 days. But apparently I was wrong. The doctor told me that it was just as bad and I was so surprised about this because of the fact that I didn’t eat for 4 of the last 7 days. But he explained to me that in my condition, I can literally not eat for many days and the food can be there because my GI system is so paralyzed and ‘dead’ that nothing goes through no matter what. That is why it was so imperative and important that I have the surgery today because I would have had all these toxins and poisons spilling into my bloodstream and going into my organs if I didn’t.
So… it looks like the next week is going to be extremely hectic. My dad is going to have to get over being sick and hopefully I won’t get it. That is a real big fear of everyone. I have no immune system whatsoever and therefore, I literally catch everyone. In addition, whatever I get is so much worse because everything is magnified for me. So, this illness that my dad has can really have a severe impact on me. Plus, with all that I am going through already, my body most likely can’t handle fighting another thing at this time. So we have to really be cautious that I don’t get sick.
Dad has to really take a “easy” too because he needs to rest out this illness. We are supposed to be leaving for Cleveland in the following week (Tuesday, September 23rd) and therefore we can’t afford for him to be sick. Yet, on the other hand, we need the funds in order to go too, so we can’t afford for him not to work either. So… unfortunately working and relaxing are not compatible so who knows what is going to happen.
If all goes well and according to plan in the sense that we have the funds and no one is sick, we are off to Cleveland Clinic in 10 days. It is more imperative than ever to get there now because that is the place where my neurologist is and he is one of the top specialists in my neurological disease. With the disease now spreading the way it is doing because of the surgery on my jaw, it is really important that we see him ASAP because he will probably be the only one to have insight as to what to do since he is one of the “founding fathers” of my illness.
In addition to seeing my the specialist for my neurological illness, we are scheduled also to see anesthesiology and to get all the pre-surgical clearances so that we can go forth with the surgeries to have the heart surgery to put the ports in and the TPN and then 14 days later to have the colon taken out. Depending on how the small intestine looks and such inside will determine how urgently I will need the multivisceral transplant. We are also going to be seeing the heart specialist because we have to know what to do with the blocked coronary artery now since I can easily have a heart attack or stroke. We are also scheduled to see the endocrinologist too, which is a very important appointment because she is supposed to be giving me a bone infusion that I desperately need since I have extremely weak bones and the doctors are extremely worried that I am going to suffer from a life-threatening fracture. If all goes well, they want to proceed with having the surgery for the ports at that time as well. So it is a very important trip there. I just hope it all works out.
When I think about having to go to Cleveland Clinic in 10 days, I don’t know how I am going to do it. I am in so much pain and I am so mentally and physically exhausted. I also don’t have the funds that are needed. There is just so much to do before we can even go. Yet, knowing that my disease is now spreading and everything, I know I have no other choice but to go. I only hope that we will be able to go and everything will work out.
So that appears to be it. Other then that nothing else is really going on. I have been trying to read Joan Rivers Book called “I Hate Everyone… Starting With Me” and I am also reading “Finding My Prince Charming” by J.S. Cooper. They seem pretty good. I can’t wait for my absolute favorite author to come out with her book, which is in October. I just love Sophie Kinsella and her “Shopaholic” books.
Well… I am going to get going. Thanks again for all your support and encouragement. Please continue to pray for me. Please continue to spread the word of my donation site ( www.gofundme.com/FallonMirsky
) because donations are strongly needed. I need so many lifesaving surgeries, medications, appointments, etc. and unfortunately I cannot receive them without help.
Thanks again for everything. I wouldn’t be where I am today without your wonderful support and encouragement.
September 10, 2014
Just want to give you an update as to what is happening because a lot has happened and in a few hours I will hopefully be under anesthesia and in surgery.
I am writing to let you know the very latest because so much is happening. In a few hours I will hopefully be undergoing another surgery that will hopefully be successful. I have to leave in a few hours for the hospital and since I can’t ‘rest’ because I am so nervous, I figured I would spend this time updating you on all that has been happening.
As I just said, I have surgery in a few hours. I am extremely nervous and scared. But thankfully it is for a change actually “local.” However, even though I am actually having surgery in the area and I will be in a hospital close to home, my dad will be staying right by my side throughout the entire time. I am so thankful for my dad because he is so amazing. I can’t thank my dad enough for all that he has done for me because I definitely would never have made it this long or made it this far without him. He is not only my “dad,” but he is my best friend. He is also my “Superman,” my knight and shining armor, and the person who made me who I am today!! I can never thank him enough. I only hope that he will be around to see the day when I am “cured” and I become a doctor so that I can help others so they don’t have to suffer like I do.
I am heading to the hospital today to have surgery on my jaw and teeth, as I have severe osteonecrosis and a massive infection going on. I am rapidly deteriorating and dying and I really need to get to Cleveland Clinic so that I can have the necessary lifesaving surgeries to save my life. I need to have heart surgery because not only do I need ports placed in my heart because of TPN and because they need central and emergency access to my heart for the upcoming surgeries, but I also need to have my colon taken out and have a multivisceral transplant. Yet, these surgeries in Cleveland cannot happen until this surgery that is taking place today happens because I am suffering with a severe massive infection. The doctors have to try to remove the massive infection before they even try to do these very risky and dangerous surgeries.
It appears that since I am doing so horribly and since my entire GI tract has shut down that I am spilling toxins into my bloodstream, which is poisoning my entire body. The toxins are poisoning my organs and brain and essentially shutting them down. Therefore, I have developed a massive infection in my jaw because I can no longer “fight” anything anymore. What is happening in my jaw is just a reaction to what is actually occurring throughout my body. Therefore, it is imperative that this infection be taken care of as soon as possible because I desperately need the other surgeries at the Cleveland Clinic as soon as possible.
Today’s surgery is going to be one massive surgery. The surgeon is going to have to remove part of my jaw, teeth, and even remove nerves as well. I will also be having metal being placed into me. I am so worried that I am going to wake up looking like a “Jack O’Lantern!” This disease has taken so much from me such as my social life, eating, walking, a career, money, happiness, etc. and I hate to think that this is now going to take away my “smile” too. I don’t know what I will do if I wake up and I look even worse than I do now because I already look horrible. To think… I was one time pretty. Now I just consider myself an “ogre” and I won’t even put up a picture without airbrushing it and fixing it up beforehand. I am nothing but an emaciated skeleton and I have no muscle tone anymore. My skin literally just hangs on my protruding bones because there is no muscle tone anymore. (CLICK SHOW ALL TO READ MORE)
I just hope that everything will go “ok”! My dad will be with me during the entire time. He is even spending the night with me at the hospital because I can’t be treated like a “regular” or typical patient. I am a very complicated person and therefore, I need special attention. For example, during the surgery, it will probably be standing room only. There is going to be at least 2-3 anesthesiologists in the room and other specialists as well. I even can’t get an IV like a normal person. The last time I had surgery, I ended up gaining 8 pounds on one bag of IV because they ‘pushed’ it and it ended up causing further problems because it set off the autonomic dysfunction.
I need this surgery to take place so that I can get to Cleveland Clinic as soon as possible. If all goes according to plan, I have surgery in a few hours. I will of course be admitted and then I will have surgery again on Friday to “clean out” my colon like I always do. We are then supposed to be leaving for Cleveland on Tuesday, September 23rd. However, this is as long as if we have the funds behind us, which as of now we don’t.
That is why it is so important to get all the help that we can get. I have so many upcoming procedures and have to travel to Cleveland and everything that it is going to cost a lot of money. However, we don’t have these funds and unless we do, we will not be able to do all of this needed stuff, which is needed to save my life. So if you can please do anything to help… whether it is to do a fundraiser, spread my website, saying a prayer, etc. I would really appreciate it. I am really rapidly deteriorating and I am basically in “survival” mode. According to doctors, I am not going to make it much longer unless something is done and done soon. I know that I have defied medical odds before and I have existed this long, but I know also that my luck in that area has also ran out. I have been in constant contact with Cleveland Clinic even though I am not there at the current moment. The doctors say that time is running out and I need to get there quickly.
When I went to have pre-surgical testing at the hospital for this upcoming surgery, they saw how bad I really was. Even though the hospital had an idea about my condition because they had a meeting prior to me coming about me and my condition, they even said that they didn’t really think it was this bad or understand it completely until they actually saw it.
The doctors were really shocked when they saw how swollen and bloated my stomach was. It is also hard as a rock. When Cleveland Clinic heard about it, they were not ‘happy’ with this news because they said my body is failing and need to get to them ASAP for surgery because time is running out. It has also been getting even more difficult to eat because nothing is going down anymore. Since my GI system is essentially ‘dead’, it doesn’t push anything down and through anymore. Therefore, it constantly feels like my entire esophagus has something in it.
Well… I just wanted to really alert you that I have surgery in a few hours. I just hope that everything will go ok. I told my parents that I hope the Toothfairy gives me money and bonus bucks too because of all that is happening. My parents laughed over that.
I really hope that everything goes smoothly. It is getting time to leave so I am going to get going. I want to rest up for a bit. I had a busy day today already because I had my dad’s birthday today. He turned the big 61. I only wish I could have made his birthday better for him and got him all the presents that he deserved, but unfortunately it just wasn’t possible. My father is the absolute BEST and deserves to be treated like the ‘king’ of his caste. Yet, instead of sitting back, relaxing, and enjoying his life... he is working harder than ever and trying to do as much as possible to get me well.
I will write again after I know more. Please say a prayer for me and please continue to share my website. Thank you for all your continued support and encouragement.
September 5, 2014
I have wanted to write for a while now, but haven’t been well. Plus, a lot has been happening lately and I didn’t want to write anything until I was sure exactly what was happening. But not that everything seems to have “simmered” down in terms of what exactly is taking place and when, I thought I should inform you all that is happening because there is a great deal that has been occurring since the last time I posted anything.
It seems like the harder I try to overcome this illness… the faster I am deteriorating. I literally can’t catch a break. The doctors have always said that I was a “ticking time bomb waiting to go off” and guess what? The time seems to have come that the bomb is finally going off. I am freefalling basically and there seems to be no stopping this illness. Whereas before we tried “littler procedures, surgeries, and treatments” because they were cheaper, more affordable, and not as invasive… it appears now that unless we do the major treatment, which are the colon being removed and the transplant… I am not going to make it much longer. There is no guarantee that even with the colon being removed and the transplant that I will be able to “beat” this illness, but that is my best option. I need to have the colon removed and this transplant because the toxins that are being produced by the colon and GI system are literally poisoning my entire body and shutting down my organ including my heart and lungs. It is causing massive infections in my body that I can’t even fight anymore. Of course I also need that huge intensive ketamine coma (which will cost $100,000) for my neurological illness and autonomic dysfunction in Mexico because the amount of ketamine in the United States is not FDA approved, it is more important right now to deal with eliminating these massive infections that are raging in my body because they are going to kill me. I am at the point where I can’t fight anything and my body is shutting down because I can’t even absorb nutrients anymore.
My tightrope is basically snapping, and I am plunging to my death. I am basically drowning in debt and yet, I desperately need these surgeries in order to survive. That is why I desperately need your help. Unless something is done quickly and unless I get the colon removed and the transplant at the very least, I will not have to worry about anything else because I am honestly not going to last much longer. Yet, even to get the colon removed, I still need other surgeries prior to it in order to ‘prep’ me for the surgery and to make it successful because they have to make me as strong as possible to survive the surgery since it is one of the most dangerous surgeries a person can have and they also have to manage this massive infection as well because it can easily kill me. (CLICK SHOW ALL TO READ MORE)
Therefore, I am pleading for your help. I desperately need any help that anyone can give me. Even $1 is one less dollar that we have to worry about. If you can please help, it would be much appreciated. I am really suffering and I am really knocking on death’s door right now. If you can please donate, I can’t tell you how much that would mean to me. Also, please say a prayer for me and please spread the word of my website. Perhaps through your prayers and through you spreading the word to others, I will be able to receive the necessary help that I need to get the treatment that I desperately need. Without your help, I will be honest with you… I don’t know how we are going to be able to afford all this. This surgery for the colon and transplant is going to be a long and very expensive road!
As I have stated in past emails, my GI system is basically paralyzed and ‘dead.’ Nothing is passing through and as a result, I am being intoxicated by all the poisons that are leaking into my bloodstream and entering my organs and brain. I am literally going into heart failure and lung failure among other things because of this. As a result, we knew that my colon was going to have to come out and a transplant was going to be needed, which included getting a new small and large intestine, stomach, pancreas, and liver. It is an extremely dangerous surgery and it is the most dangerous transplant that you can have. Only like 6 hospitals in the country actually do this transplant.
However, in order to do this surgery and transplant, the transplant team said that I would need a central line placed in me such as one called a HICKMAN. The HICKMAN would allow the doctors emergency access into me, would give a way to deliver medication and also a way to draw blood from me. It would also take away the need for repeated peripheral IV sticks. Finally, it would be a way to give me TPN so that they can try to feed me because I only weigh the 60s and I can’t afford to lose any weight. In addition, I am extremely malnourished and my body can’t fight any infection whatsoever. I desperately need the TPN because I am not in the state that I can definitely survive even a simple operation because I am so ‘weak.’ I have no reserves and no resistance towards anything. The doctors don’t even know if I will be able to heal and they are scared that I won’t be able to heal especially when I undergo a MAJOR surgery like this.
But just as we were about to leave for Cleveland Clinic to have the port placed in me so that we can get the show on the road so that I can have the colon removed and then the transplant… everything just started to fall apart. That is when the huge downfall that started and now there seems to be no stopping it. When I went for pre-surgical testing it turned out that my heart was doing worse than we originally thought. Not only is my heart failing me, but also it turns out that I have dense calcium calcifications in the coronary artery. This is definitely a big “uh oh” and very dangerous because it can easily cause me a heart attack or even a stroke. The doctors wanted me to go for a “stress test” to further determine how bad it is, but when I went for the test they had to stop it and they couldn’t do it. It turns out that I am too small for the test and they didn’t know how much radioactive stuff to give me because of my weight. So I couldn’t have that test after all. They have to come up with a new way of doing that test now.
In addition, I developed an infection in my mouth and jawbone, as I have osteonecrosis and the left side of my jaw basically was giving me a lot of problems. As a result, the Cleveland Clinic said that I needed to have the surgery to deal with the infection in my jaw and mouth prior to having the port placed in me and then following with the rest of the surgeries. However, with it being the end of the summer and Labor Day, it was difficult to schedule because the doctor was on vacation and everything. So the surgery was finally scheduled for mid-September!
In the meantime though, I ended up developing a massive infection on the right side of my mouth and jaw as well. So now not only do I have an infection on the left side of the jaw that needed surgery on, but also now I developed a massive and I mean massive infection on the right side. The right side is so bad that there is no saving the teeth there or the bone. The doctor said that the infection is so bad that even in a healthy individual that the bone and teeth would have to come out because the infection is just too horrendous. So whereas the surgery was originally scheduled for mid-September, the surgery was just moved to this coming Wednesday, which is like 5 days away.
I just don’t understand it. No one takes better care of his or her mouth than I do. I mean I literally brush my teeth and gums like every time I eat, which is like at least 3 times a day, and I use a special fluoride treatment that is supposed to be really strong. But it seems that the more I try to keep my mouth in tip top shape, the worse it’s getting. My jaw and teeth are literally crumbling.
It turns out that my body is failing me so much and my heart is doing so bad that it is now showing itself in my mouth, jaw, and teeth. When I spoke to Cleveland Clinic, they said that my organs are failing so badly and that is why all this is happening in mouth and jaw. They said that I am extremely sick and desperately need surgery for my colon and transplant ASAP. They said that my body isn’t going to make it much longer. They told me that my body is in “survival mode” right now in that all my veins literally shrunk and even the values that are being shown on the bloods are not the true value because of this shrinkage of the veins. They said that my bloods are really much worse but because of the veins shrinking, the values are elevated since the veins are so small and the values go per ml. But if you took normal size veins and put them in me… you would see exactly how bad it really is. So we already know how horrendous my bloods are now… I can’t imagine how much worse they really truly are. I don’t think I even want to think about it. My veins are shrunk so much and my body is in survival mode and that is why I am so thirsty. I just can’t absorb anything anymore.
So now I scheduled for surgery on Wednesday to take care of this huge massive infection. I am really scared and worried because I am scared that I am going to wake up with no teeth in my mouth. I already know that part of my jaw will be missing, I am going to be losing at least 3 teeth, and I need at least 4 root canals. At least I will be under general anesthesia, so I won’t feel anything. It is going to be one long day though and one really long surgery. I am so scared though what my mouth is going to look like. This disease has taken so much from me already… I don’t want it to take my ‘smile’ as well. This disease is literally stripping me of everything. It is stripping me of my social life, my colon, my intestines, my stomach, the ability to walk, the ability to eat, etc. and now my smile.
I don’t want to wake up and look like a Jack Lantern. I don’t know what I will do if I wake up and you can see all those spaces when I open my mouth. I know that you can always get implants, but implants are expensive and I know for a fact that will NEVER be an available option for me because I will never be able to afford them. I don’t even know how I am going to afford this surgery because even though the hospital is covered by insurance, the surgeon is not and I know that is going to cost us an arm and a leg. Last time I had this surgeon work on me it cost us about $7000 and it wasn’t nearly this bad. I am so scared. (CLICK SHOW ALL TO READ MORE)
So surgery is scheduled for Wednesday at 8 AM, which means that I need to have everything done by Monday in terms of clearances. I need to have clearance from my medical doctor, anesthesia, cardiac, pulmonary, and also have an echo. I really don’t know how on earth I am going to be able to have all that done by Monday especially since I have surgery today (Friday) and then I am sure that I am not going to find a doctor that works on the weekend. Therefore, I will really have to hope that everything can be done on Monday. I have medical clearance and anesthesia clearance definitely on Monday morning. However, I don’t know how I am going to get the other 3 accomplished. I only hope that perhaps the hospital can fit me in to have those as well when I go to see them on Monday for anesthesia clearance. I can’t believe I was just told today that I needed all these clearances and I need to have it done by Monday. I can’t afford to have my surgery postponed and yet, I definitely need these clearances because of how sick I am especially since my heart and lungs are failing me among other things. Never a dull moment, right? So we will see what will happen. As it is the hospital wasn’t going to give me anesthesia on Monday because they said they were all booked up and wanted me to only come today for it. After I had to tell them literally how sick I really am and how I had surgery today to clean how my intestines like I do every Friday, they finally granted me the ability to come on Monday. But what a fight that was to get!
I am really hoping that everything will go ok and the infection will get cleared up. I know already from the doctors that it is a very massive infection… even for a normal and healthy person. I have been on a very strong course of antibiotics, so to be honest with you I am really unsure how it even developed on the other side and even got so huge when I was taking that high dose of antibiotics. The doctors say that due to my GI system being ‘dead’ that I don’t absorb anything. So apparently even though I was taking all these antibiotics, I was just not ‘absorbing’ them. Hopefully though after I have this surgery, I will be able to have the infection clear up quickly because while I am in the hospital I will be given IV antibiotic which will hopefully definitely be absorbed because it bypasses the GI system and goes directly into the bloodstream. I definitely need this to be cleared because doctors have determined that toxins from the bacteria in the infected tooth and jawbone may inhibit the body’s natural ability to suppress tumor development.
Well Wednesday is the big day!! I am scheduled for 8AM surgery. My dad will then spend the entire day and night with me because he can’t leave me alone in the hospital since the surgery is being done here and the nurses and doctors don’t really know how to ‘care’ for me because I can’t be treated like a typical and normal patient. I need special care, as I can’t really be touched especially on my legs. Also, if I need meds, to go to the bathroom, or something, someone has to make sure that I get it right away because I am so hypersensitive that I can’t wait. I am hoping that my mom will be able to come up to the hospital that night to visit me. Usually I never have surgery in the state and therefore, my mom never gets to come to the hospital to visit me. However, now that I am actually having surgery in the area, I am hoping that she will be able to come up to the hospital. But it all depends if I am done with surgery and if I am out of the ICU.
I am so glad and fortunate that my dad will be with me. I really do have the best dad in the entire world. I just feel so bad because I know he really is working so hard to finish all his work, make money, take me to doctors and care for me at the same time. I feel so bad because he is really working like a horse and he is no youngster. There is nothing that he wouldn’t do for me and I am so grateful for that. But I don’t want him to kill himself in the process. If anything ever happened to my dad, I would never ever forgive myself.
So it is really going to be hectic next week. Between all the clearances and surgery, I am really going to be busy. I also have my typical surgery on Friday to get my intestines cleaned out.
Besides having the surgery on Wednesday, we are scheduled to leave for Cleveland Clinic about a week after the surgery. But even with going to Cleveland Clinic, there is still so much to do before we even go there. I need to get a updated bone density scan because I am seeing the endocrinologist when I go to Cleveland Clinic. I need to have a bone infusion because my bones are so very fragile and they are scared that I am going to get a life threatening fracture. I also need to go to my pain management doctor and pick up my pain meds because I can only get them in New York and I am due to for them. So there is so much to even do before we even leave for Cleveland. I don’t know how we are going to fit everything in.
So dad and I are off again to Cleveland Clinic. Not only are we seeing the Endocrinologist and hopefully having the infusion at that time as well instead of having to come back for the infusion, but I also have an appointment with all these other doctors to get the necessary clearances for the surgeries that I need there. I also have appointments to further look into my heart. I also have an appointment with the doc who is supposed to be one of the leading doctors in my neurological disease. He is retired, but he still comes back once a week to see his “old” patients.
If all goes according to plan, the Cleveland Clinic wants to do the heart surgery at the end of that week. They want to deal with putting the HICKMAN central line in and they also want to do the heart surgery to deal with the dense calcium calcifications in the coronary artery because it is causing a blockage. They really want to get these surgeries done ASAP because not only do they want to get the show on the road because the sooner I have these surgeries, the sooner I can have the colon removed and transplant, but they want to have a central access into me because I am really not doing well and this is an emergency way to get access into me right away. Also, they want to deal with the heart surgery because I can easily have heart problems such as a heart attack or stroke because of the dense calcium calcifications.
The plan is that I will be able to come home for a bit after these surgeries at the Cleveland Clinic and after I get the TPN going in the central line. After all, they want to give me about 14 days of TPN before I undergo the surgery to remove the colon because this way it will give me some time to get some nourishment and build some reserves up so that I can ‘heal’ from the operation and fight infection. As it is… the doctors are extremely fearful of the operation that I am having this coming Wednesday because they are afraid I won’t heal or that I am going to get even sicker. (CLICK SHOW ALL FOR MORE)
However, they will only allow me home for a little bit until I get the colon removed only if I can tolerate the TPN without the ketamine. I will be getting TPN with ketamine so that I can hopefully get the TPN more comfortably since in the past I wasn’t able to tolerate the TPN. The hope is that the ketamine will keep me as comfortable as possible especially since ketamine is known to “quiet down” my neurological illness, the autonomic dysfunction, and pain. However, if I can’t get off the ketamine, then I will have to remain in the hospital for the entire time I get the TPN and until I get my colon removed, which is for about 14 days. I will then have to stay in the hospital for about 10 days after the colon is removed and then even stay in the hotel in Cleveland for about another week or so after that to make sure that everything is “ok” before heading home. So if I can’t go home before the colon is removed, I will be stuck in Cleveland for about 5 weeks. It will come out to 5 weeks no matter what, but it is just a matter of being able to go home in the middle for a bit or not depending on whether I can stop the ketamine and tolerate the TPN by itself. Depending on how badly the small intestines are when the colon is removed, it will determine how fast I will need the transplant.
I just wish I could close my eyes and it will be over with already. I don’t know how much more I can take of this. It is just too much already. I can’t take it physically or emotionally anymore. I have to say though that I never met a better team of doctors than the Cleveland Clinic. My transplant team is simply amazing. They really take the burden off of me with everything. In New York and every other place I went, I had to make my own appointments and worry about everything. Yet, the transplant team in Cleveland Clinic actually handles everything for me. They are completely on top of me. They wanna know everything about me, they make all my appointments for with any specialist I need (even if it isn’t directly related to the transplant), they get me in with doctors that are booked or don’t even have hours, they call back and spend countless hours on the phone talking to me and explaining things and answering my questions, etc. They are simply the most amazing doctors that I have ever met. I am so glad that I have them as my doctors. I don’t think I have ever been happier.
Well I have my surgery in a few hours to clean out my intestines. It’s just another Friday. I wonder though how it is going to be because my doctor is the same team of doctors and the same place where Joan Rivers went. I hope that there isn’t that much media camped out there and I hope that we will be able to get parking close to the door. I can’t believe honestly that Joan Rivers passed. She was one of my favorite people. I am not one that usually particularly cares for comedians in the sense that I never think that they are “funny” and such, but Joan was different. There was no one else like her. She was hilarious. I loved watching her on TV and everything.
Laughter is an instant mini-vacation. Smiling and laughing can have a positive effect on your well being, as it acts as the body’s natural painkillers and is something I definitely I need. I have also decided since Joan Rivers has made me laugh and smile so much, that I am going to read one of her books because not only will I hopefully enjoy it, but I am hoping that the laughing that I will get from her books will hopefully also better prepare me for surgery and make me stronger since laughing expands the lungs, stretches the muscles in the body. This exercises the body, replenishing the cells from a lungful of oxygen and gaining all the benefits of exercising the body. Also… since I have been in such a rotten mood lately with everything happening, I figured what more appropriate book is there to read than Joan River’s book called “I Hate Everyone… Starting With Me!”
I have also been busy trying to learn how to put on makeup in a “professional” way. I hate the way I look and I will definitely not show my face unless I have makeup on. I am very embarrassed by the way I look because I am so emaciated and I am extremely pale. In fact, my dad always calls me “Snow White” because I am so pale. I hate my face because my skin literally sags on my protruding bones because I basically have lost all my muscle tone everywhere in my body including my face. Therefore, I am very self-conscious on the lines and wrinkles that are made on my face.
I used to be a person that loved to take pictures. However, now I will not even put up a picture unless I ‘airbrush’ it. Even with airbrushing I am not satisfied with it. But at least it is better than without. I also like to dress up as nice as I can be everyday by wearing makeup and nice clothing because not only do I like to feel as “normal” as can be, but I also believe that if you “look good” than you “feel good.” That was something that my grandma always instilled in me and she was right. In fact, I try to conceal how sick I am by dressing up as much as I can with makeup and clothing, and I must say that I do a good job. Most people don’t realize the extent to which I am so sick because of how much I push myself and how “good” I look with the makeup. Yet, who would think that beneath that beautiful façade is a person suffering and literally dying.
So I have been watching how to put on makeup in a more ‘professional’ way so that I can look my ultimate best. I must say that I have improved so much. I have been getting compliments like I have never gotten before. So that must mean something! I even gave my mom a makeover last weekend. It was a surprise to her. I must say that she did look so pretty after I gave her the makeover. What a difference it made!
Well… Yesterday was my dog’s birthday. He turned 9. However, since I didn’t get to really celebrate his birthday because I really wanted to take a birthday picture of him and get him a birthday bone and everything, I told him that we are celebrating his birthday today too. I love those ‘birthday’ bones and since you can only get it once a year because your birthday only comes once a year, I wanna get it for him. I can’t believe he is turning 9.
Speaking of birthdays… Dad’s birthday is next week. Yup… his birthday is September 9th. I really wish I could have made his birthday better. Hopefully next year I will be better and we can celebrate it BIG time. After all, he deserves nothing but the very best because he is the best dad in the world. He is not only my dad, but also my best friend, my superman, and my knight and shining armor. If it wasn’t for him… I definitely wouldn’t be here today. I owe him so much. He is the absolute best. He is one of the MAJOR reasons why I am holding on!!
Thanks again for all your support and encouragement. Again, I want to thank you for all that you have done and continue to do for me to keep me going. It definitely has not been an easy road and I really hope that I will be able to get the necessary treatments that I really need soon because I am seriously not going to make it much longer. If there is anything that you can do… whether it is to donate, spread the word of my website ( www.gofundme.com/FallonMirsky
) or even say a simple prayer… that would be much appreciated. Remember… no donation is ever too small and anything that you do is very much appreciated.
Thanks again for everything!
August 27, 2014
I just wanted to write and let you know the absolute latest because so much has happened in the past few days. I was supposed to be leaving this week for the Cleveland Clinic, as I was scheduled for heart surgery and multiple appointments, but unfortunately due to finances and other events occurring, we had to cancel them and reschedule them. I only hope that I will be able to last long enough to be able to have all the surgeries that I need because now that these surgeries and appointments were delayed, it also delays the entire process. It pushes back getting my colon taken out and the transplant. Therefore, it means that it leaves me more time to get sicker, which is definitely something I can’t afford. Time is definitely not on my side at this point in time.
I am really suffering and really deteriorating, but unfortunately things are not working out like they should. I was really hoping that everything was going to go according to plan and I would be able to receive all the necessary surgeries that I would need and I would be on the road to recovery and getting my life back. But like always, I hit another huge hump in the road.
We are really suffering in the financial area. That is one of the main reasons why it was impossible to go to Cleveland Clinic this week. There is only so much money you can “charge” on a charge card and take out on loans. That is why I always ask for help because without the help of others, it is literally impossible to get well. Everything costs money!! I am surprised that they don’t even charge you for the air that you breathe. Anyway, since my medication, procedures, doctors, traveling expenses, etc. are so expensive; we really can’t afford it anymore on our own. That is why I am hoping that others will help spread the word of my website or help me “fundraise” so that I can receive the much-needed funds so that I can receive all this stuff that I need to survive.
As I am getting sicker and sicker, I have had to travel more and more to Cleveland Clinic. I also have to spend longer times there and I have to have more procedures and surgeries. Therefore, it is more important than ever to try to raise as much money as possible because we had a hard time affording all my medical treatment before. However, now that I am sicker than ever and I need to go to Cleveland more often and such… it is even worse. It even makes it harder because when we go to Cleveland, my family really doesn’t make any income whatsoever to pay the bills. Since my dad is always with me when I go to Cleveland, he is not available to work and bring in a salary. Although my mom stays back in New York to try to keep the business going, she can only keep the “office work” going by answering the calls, but in terms of jobs happening and bringing money in… it just isn’t possible. I am so scared that something is going to also happen to the business because there is only so much that my dad can stay away from the business because customers are not going to want to “wait” for him to return. When they want a service, they want it NOW!! (CLICK SHOW ALL FOR MORE)
So if you can please help me to raise funds so that I can receive the lifesaving treatment that I need, I would extremely appreciate it. Whether it is by spreading word of my website ( www.gofundme.com/FallonMirsky
) or having a fundraiser, it would be much appreciated. If you have any questions, please feel free to contact me at Femirsky@gmail.com
In addition to the insufficient funds, I also developed a massive infection in my mouth and my jaw ended up caving in due to the osteonecrosis. Therefore, it really made a huge problem for the surgery that was supposed to take place on Monday. But even without the infection occurring and delaying the surgery, there would be no way that I could have the surgery because I wouldn’t be able to stay the length of time needed for the surgery because we didn’t have the money.
I was scheduled to have heart surgery and to have central lines placed this past Monday. This was all being done in preparation for the colon being taken out and then the transplant. The doctors also wanted to have central access to me because I am getting so sick and they wanted an “emergency” way to get stuff into me in case something should happen. They also felt it was a good idea because they were scared that with everything happening, I was going to get an infection or something due to all the multiple needle sticks and everything. Plus, they were hoping that with these lines, it would save me the trouble of having to be stuck all the time with needles because I can’t take the pain anymore and I am suffering enough. They also wanted the lines to give me medication and especially TPN. They were hoping to give me at least 2 weeks of TPN prior to getting the colon taken out so that I will be better nourished, which will have made me stronger for the operations. After all, these operations are extremely dangerous and intensive even for a normal person. So you can just imagine how dangerous and hard they will be for me when I am so fragile and everything is “magnified” for me.
The plan was that I would have the lines placed and then I would spend about a 2 weeks in the hospital getting used to the TPN. Then they said that they would allow me to go home for about 2 weeks while I continued to receive TPN and got a bit stronger for the operations. I would then return for the removal of the colon, which I would have to stay there for 3 weeks at that time. However, that was the plan only if I could tolerate the central lines and the TPN. If I couldn’t… I was stuck there until the surgery to have my colon removed, which was definitely something we couldn’t do because there was no way that we could afford for me to be there all that time. We didn’t even know how we were going to afford just the 2 weeks that we were going to have to stay there initially. There was no way we would be able to stay there longer.
If I wasn’t able to tolerate the lines or TPN, they said that I would have to remain in the hospital to have it done until I got the colon taken out. While I was in the hospital, I would be under Ketamine sedation to try to make me as comfortable as possible and that is why they would have to keep me there while the TPN did its work. Therefore, I would have to basically spend the entire 5 weeks that this entire process is going to take all at once instead of being able to divide it up and come home for a bit in between, which would also be time where my dad could have worked and we could have brought in some money from working.
5 weeks would have been the minimum that I was going to have to stay there. Either way it was going to have to come out to spending at least that amount of time there. It just mattered whether I was going to be allowed to come home in the middle or I had to stay there and it had to be done all at once. In addition, after the colon was taken out, it would determine how urgently I would have to have the transplant. If the small intestine were really badly affected, I would need the transplant sooner than ever. After all, I am being intoxicated and poisoned because of my severe gastroparesis. I am literally having poisons spilling into my bloodstream and entering my organs and brain. It is literally killing me. Something needs to be done and done fast because I am becoming intoxicated.
But even though the operation was cancelled, we were still planning on going to Cleveland tomorrow because we were scheduled to see pain management and endocrinology. However, even this has changed, as we are no longer leaving tomorrow. We are now scheduled to see pain management on September 24th because we are going to see my old doctor who is supposed to be the most ‘knowledgeable’ about my neurological illness.
We decided the trip on me was going to be way too much. The traveling is definitely too much, and it really takes a huge toll on me. In fact not only do I lose weight when I go which is definitely something that I can't afford because I already weigh in the lower 60s and every pound is so crucial. Once I lose it... I can never gain it back. I'm so weak all the time and it is especially worse than ever. So since traveling makes me weaker... they wanted to make sure it was definitely worth it. It takes me over a week at least to bounce back after we come back.
I was originally given an appointment with another doctor because my old doctor was ‘retired’ and not seeing patients anymore. We were supposed to see this one doc in pain management and we decided that we are better off postponing because even though this doc was somewhat knowledgeable in my condition and everything... my old doctor is really the guru in my illness. To be honest, not many doctors know about my neurological illness. A lot of doctors claim that they do, but they really only know the basics. The doctor that I am seeing on the 24th actually is one of the founding fathers of my illness as he has done research in the area, publicized on it, and spoke about it. So we didn’t want to go to Cleveland and see a doctor that wasn’t as knowledgeable as he was and couldn’t really help me. You know? After all… I had more than the “normal” types of treatments that would typically be given for this illness. I need topnotch doctors because of how extreme my case is. So since my old doctor is just seeing patients one day a week and only seeing ‘old’ patients, we decided to cancel the current appointment that we had with the doctor tomorrow and go with him. (CLICK SHOW ALL FOR MORE)
The only thing that I am a bit worried about in not going tomorrow is that I did have an appointment with the endocrinologist and I really honestly needed that appointment. I have that pituitary tumor that needs to be handled and I also need a bone infusion badly because my bones are sooooo bad and basically crumbling. I've had to stop the bone infusion because my endocrinologist here literally got afraid because of the osteonecrosis. The doc said that I still should have it done but since it was the endocrinologist dispensing the infusion and literally bring held responsible... He of course wouldn't do it. The osteonecrosis doc said that the benefits definitely outweigh the risks and told him how desperately I need this infusion but if course the endocrinologist wouldn't do it. What do u expect from an old timer?? He was a chicken. So I had no luck whatsoever having it done here and desperately needed it because the bone infusion actually 'builds' bone and I was even still losing bone with the infusions... So u can just imagine how bad I'm doing these last two years without the infusion. I don't want to even know or guess. They are so afraid that I'm going to get literally a life threatening fracture because of how fragile I am. I desperately need that infusion. All the docs say so but of course there's no one here to do it because the endocrinologist here refuses to do it. So I was going to Cleveland to meet with this top endocrinologist. She was famous for not only the pituitary tumors but also for the infusion.
But we are really on the fence as to what to do about attending that appointment. My dad doesn’t know if it is honestly worth going for this appointment or postponing it until we come back on September 24th. My dad is scared we are going to go all that way and the doctor is not going to do that infusion after all. So he doesn't wanna travel all that way for especially one day because it takes so much out of me and it's not like we have the money to just 'give out' for nothing too. But of course they won't give me an answer whether they will do it not do the infusion until AFTER they see me. So we don't know what to do. I agree that it would suck to go all that way and pay all that money for them not to do it. But then again I desperately need it and they aren't doing it here. They are 'supposed' to b doing it there but who knows once they see me and goes over everything. U know what they say ahead of time and then what they say when you actually see them are two different things.
So like I said… we are thinking of postponing the appointment to when we come back for the pain management appointment because this way we kill two birds at the same time and don't just make a trip for one day. But what stinks is that if we meet with the doc and she wants certain testing prior to the infusion... I won't b able to really get it. At least if I went this time and I needed testing or something... I could get all that is needed and then also have the infusion completed when I come for the appointment on the 24th instead of then having to wait and come back AGAIN.
I already think she's going to want another DEXA SCAN before proceeding because she said to bring all records including DEXA SCANS within 2 years. However, I did have one, but I think it was actually 2 years ago. So I bet she's going to want an updates one especially with my condition and everything before proceeding. So I doubt that even if I went this week to Cleveland that she would do it because she would need updated records, but at least I would be able to then know the plan and have the necessary testing done. And then when I come back on the 24th at least I can have it then.
So it appears that we are going to be putting off both appointments until September 24th. However, it is also contingent on when I have the surgery for my osteonecrosis and infection in mouth and teeth because that takes priority. Not only am I really suffering with this as it is difficult to eat and drink besides it hurting just in general, but it is holding up all the other crucial surgeries that I desperately need such as the heart surgery, placing of the lines, the colon coming out, and the transplant. However, I wont know the exact date of that surgery until Tuesday because my surgeon is on vacation.
I am still suffering with my right arm being "dead"! I guess it is getting better, but it is definitely still annoying and not the same. I am just hoping that it will still continue to improve and hoping it will disappear. It never happened in the right arm before. Usually it only happened in the left arm and thank goodness it always improved. We don't know exactly what causes it, but we think it has to do with compression of the nerves or something since I don't have any "muscle" or anything protecting it. My arm and hand literally go completely numb like when it "falls asleep." However, it never really 'wakes up.' Usually in the past when it happened in the left hand, it was completely numb and dead. At least in the right hand it wasn't as numb and it is basically the feeling of when it 'starts' to wake up and has the tingly and soughta week feeling going through it. It is just so annoying.
Isn’t it amazing that things always happen around holidays and weekends? I find that so much always takes place during that time because there isn’t anyone around!! Nothing ever happens on like a Monday when you have a whole week to work things out. That would be too simple!!
So I guess in the meantime I just gotta hang in there. I just hope that these surgeries come soon and that they work because I am suffering so much. I am deteriorating like crazy and I don’t know honestly how much longer I can hold on. I really want my life back already. I am tired of being sick.
On a side note, I was contacted by the “Dr. Oz” show to possibly be on it. It isn’t a definite yet, but it is a possibility. They took down all my information and I am waiting to hear from them. I am not counting my chickens before they hatch because I have been disappointed too many times in the past. But I will definitely keep you posted.
Well… I guess I will be going. If you have any suggestions about raising money or can help out in any way, I would really appreciate it. Please continue to pray for me. I can’t tell you how much I appreciate all the encouragement and support. I wouldn’t have made it this far without you. Doctors are so impressed that I am still alive because by medical standards there should be no way that it is possible. However, I am the energizer bunny rabbit and therefore I “keep going and going and going.” Plus it is through people like you that get me over the humps and keep me going as well! Thanks for traveling this journey with me and standing by my side.
August 20, 2014
Well… I know it has been awhile, but I figured that I would write a bit and say what has been happening and what is in the mix. Gosh… there is so much happening lately that my head is literally spinning! I don’t know if I am coming or going… and I mean that literally. Everything is so up in the air.
Things are continuing to worsen. I don’t know honestly what is going to happen. I just know one thing… I am definitely running out of time and I desperately need help ASAP. I am rapidly deteriorating and it is getting to the point where my deteriorating is starting to snowball out of control. We really need to stop it or if nothing else… at least slows it down!!
The doctors honestly don’t know how I am still living. To tell you the truth, they don’t even know how I made it this far. I don’t even know the answer to that. The doctors literally call me a medical miracle because there is really no possible way that I should be “living” right now. I am literally less than 70 pounds, my bloods are horrible, I have poisons running through my blood stream, my organs are failing, I can’t eat or drink, etc. Yet, I am still alive! I tell the doctors that I defying all odds because I have an excellent support system. It is people like you that help me get through this. If it weren’t for people like you, I definitely wouldn’t have made it this far and have been able to keep going. Thank you for helping to keep going and to pushing onward.
But the truth is that I really don’t know how much longer I can hold on. I am really sick and deteriorating faster than ever. I desperately need help but unfortunately it is dependent on so many factors. The ability to get better goes way beyond just being in my own hands. I desperately need the help of others. Unfortunately so much of getting better depends on money because I need surgeries, treatments, procedures, medications, etc. that we just can’t pay for on our own. I desperately need funds donated or fundraisers held to help me raise the much-needed money so that I can get these lifesaving measures before it is too late. Therefore, if you can please help me in any way possible… whether it is by spreading the word of my website to donate ( www.gofundme.com/FallonMirsky
), fundraise, etc. I would really appreciate. If you have any questions or suggestions, please don’t hesitate to contact me at Femirsky@gmail.com.
I have been thinking of all different ways to find ways to raise money, but unfortunately I am all out of ideas. If only I could have something go “viral” like the fundraiser for ALS is doing with the “icewater” challenge. I only wish I could have something like that happen to me. To be honest, I am feeling a little down about that fundraiser for ALS too. I would have loved to be part of it, but unfortunately due to my illness, I am not able to partake in the icewater challenge even if someone “challenges” me. I am too hypersensitive and I wouldn’t be able to tolerate water (especially coldwater) being poured over me. I only wish I was normal like other people. (CLICK SHOW ALL FOR MORE)
As I told you in previous messages, I was going to the Cleveland Clinic to have my colon taken out and to have a multivisceral transplant. My GI system is completely “dead” and unfortunately, I have no other choice but to have my colon taken out and to have the transplant. Not only is nothing passing through my system, but I have all these toxins also pouring out of my GI system and entering my bloodstream. I am literally being intoxicated and poisoned, as it is going into all my organs and even my brain. I really need to handle this because not only is it causing me not to eat because there is no movement in my GI system and therefore I look like an emaciated skeleton, but it is literally poisoning my entire body.
There, the colon has to be removed as soon as possible and then once it is removed, it will determine how FAST and urgent the transplant will have to occur. If the toxins and poisons are mainly just coming from the colon, then I will have more time because that affected organ will have been removed. Yet, if they find that the small intestines are badly affected, they will have to jump on it immediately go for the transplant sooner rather than later. This is very major and dangerous surgery. In fact these surgeries are basically the most dangerous that a person can have. It is the most dangerous transplant by far, as I will need a new stomach, small and large intestine, pancreas, liver and spleen. Only 6 hospitals in the country perform this crucial and life-threatening operation… Cleveland Clinic being one of them! However, since I will need to have so many surgeries procedures and since I will need to have to have them take place in Cleveland, Ohio, I will need all the help I can get from others in getting funds to pay for all this. After all, if I don’t have the funds, I won’t be able to get these procedures because no one is going to do any of this stuff for ‘free’ and I still have to worry about traveling and living expenses while I am there especially since I will be there for awhile and my father will not be able to work since he will have to be my caretaker while I am there. So we will have no money being made and brought into the family.
I was all set to start my journey into having these surgeries this upcoming week. The doctors also wanted to work with my lungs because I am literally aspirating and drowning in my fluids and they want to make them strong and clean for surgery. I literally just got back from Cleveland Clinic a few days ago and it was decided that it was urgent that all this stuff was needed immediately. Yet, I still needed to have one more operation before I could have the colon taken out. I would need to have heart surgery and surgery to put central lines and ports in. This way they would have central access to me during the operation as well as when I am not in the operation.
The doctors know how “sick” I am and they really want to get some central lines into me. They want to put these central lines in me not only to provide central access for during the operation, but I desperately need it because they want to use it to give me nutrients, give and draw blood, give meds, etc. The doctors don’t want to keep sticking me with needles anymore because not only am I super sensitive and it is extremely painful, but they are scared that with all the needlesticks that I am going to get an infection and that is the last thing that we need right now. If I were to get an infection, it would be a disaster because my body is so depleted and knocked down that I would easily die. I am glad though that they will be able to give me meds though through the line because I take so many pills daily that I can barely swallow them. I take over 50 pills daily and it is literally impossible to swallow them. In fact, they are always getting stuck in my throat because I don’t even have the “swallowing” mechanism in my esophagus. There are so many times that doctors have literally had to go in and actually remove the pills because they have just stayed in the esophagus. In addition, pills don’t even get dissolved anymore. I can literally take pills and then 12 hours later when I throw up, I can throw them up whole, which means they were not absorbed!! So at least by having these lines I will be able to have an easier time taking them and my body will definitely be able to absorb them.
The doctors honestly don’t know how I am still living. To tell you the truth, they don’t even know how I made it this far. I don’t even know the answer to that. The doctors literally call me a medical miracle because there is really no possible way that I should be “living” right now. I am literally less than 70 pounds, my bloods are horrible, I have poisons running through my blood stream, my organs are failing, I can’t eat or drink, etc. My blood pressure is basically also nonexistent as it only reads like 70/40 and I have severe bradycardia with a heart rate of in the 40s. Yet, I am still alive! I tell the doctors that I defying all odds because I have an excellent support system. It is people like you that help me get through this. If it weren’t for people like you, I definitely wouldn’t have made it this far and have been able to keep going. Thank you for helping to keep going and to pushing onward.
As of right now, the doctors feel that the only way to “buy” time is through TPN. The doctors feel that I will never be able to gain weight or ever become normal weight again… even with the colon coming out. They said that I am so far behind that it will literally be impossible to ever weigh “normal” again. They would love for me to weigh in the 90s and even 100 lbs. But they doubt that is ever going to happen unless I get that transplant. But in the meantime, they say that TPN is my only lifeline that will buy me time. Yet, it is only temporary and therefore, I only have a short amount of time to have it and therefore, we have to have the colon ready to come out and the transplant ready to happen so that whatever the TPN helps I won’t lose when we have to stop it. After all, central lines are really dangerous because each year 80,000 central line bloodstream infections occur.
I have a choice of which type of line I want. I still haven’t made my decision which one I prefer because I want one that will not only work well, but I want one that will “look good” as well. I know I shouldn’t be worried about the “looks” of something, but it is important to me. I still want to look as “normal” as possible and I don’t want to look sick. No matter how sick I am, I still wake up every day and get dressed as if I am not sick. I get fully dressed with makeup and nice clothing just as a normal person would because I truly believe that if you “look good” then you will “feel good.” That is why when I go out, people don’t necessarily realize how truly sick I am because I mask it. I mask it both physically and emotionally. Yet behind that façade is a person who is dying inside and who desperately needs help. I am crying in the inside, but I won’t let others see my tears. (CLICK SHOW ALL FOR MORE)
I have a choice between 3 lines. The first line is the one that goes into the jugular vein and extends to the heart (specifically the superior or inferior vena cavas). The second line is called a “Hickman” line. This line goes into the subclavicle and goes into the heart that way. Those two lines are much more intensive than the third. The third line is in the arm, which is called a PICC line. It is placed into a vein and travels into the heart and into the vena cava until it reaches the right atrium. All these central lines are risky, as the Centers for Disease Control and Prevention say that the prevalence of central line-associated bloodstream infections results in about 62,000 deaths per year.
So I am supposed to head to Cleveland on Sunday to have the heart surgery and to have one of the above central lines placed in me. The doctors wanted to have this done ASAP because like I said before, I am really deteriorating and they wanted to make sure that they had central access to me in case of an emergency. They also wanted to build me up for the surgery to have the colon taken out, which needed to happen ASAP because the colon was literally poisoning me and causing me to become intoxicated! The colon removal is scheduled for September 17th. The doctors already said I will have to be there for 14 days prior to prepare me for the surgery, then I will be hospitalized for about 10 days after the surgery, and then I will have to remain in Cleveland for another week at least to make sure that everything is ok before they send me home. Then I will have to worry about the transplant afterwards. So we don’t know how on earth we are going to do this as well because not only are we having a difficult time paying for the actual procedures and traveling expenses, but my dad won’t be working all this time and we won’t be having an income. I am so worried that the business that my dad owns will have to end up being close down and something will happen to our house at home because there will be no money coming in to pay the pills. That is why I am pleading for help. I know I sound like a “broken record,” but it is so important!
However, we don’t know what is going to happen now with the surgery on Monday to have the lines placed at the Cleveland Clinic because I have a massive infection in my jaw and teeth that needs to be taken care of. We knew that I had a problem on the right side of my mouth, but unfortunately, the other day the left side of my mouth caved in as well. I have severe osteonecrosis and therefore, the bone is dying. So, I desperately need to have surgery done ASAP to take care of this infection and also to repair the teeth and bone that has caved in.
I knew that the other side of my mouth was going to cave. I felt something really strange happening the day before. Then when the bones and the teeth fell out, it was all black and that proved it was all ‘dead’!
So we are not sure exactly what is going to happen. I am waiting to hear when the surgery will be scheduled for my mouth. The surgery for my mouth will be done here and I am really scared because I don’t know how we are going to afford it. The last time this happened, it ended up costing us nearly $7,000. Even though the hospital was covered by the insurance, the surgeon was not and the only ones that perform this kind of surgery are not covered. So I have no choice but to pay out-of-pocket for this surgery because there aren’t other surgeons that are “covered” that do this surgery. To think now that it is so much worse too. I hate to think how much this is going to cost me.
I am hoping to hear sometime tomorrow about when the surgery for my mouth will be. I will then know then what will be happening with the upcoming surgeries at the Cleveland Clinic. After all, these surgeries at the Clinic are really crucial and really important that it happens ASAP.
However, even if the surgery is cancelled in Cleveland next week to do the heart surgery and put the ports in, I will still be heading there on Wednesday because we have a meeting with docs on Thursday. We had this appointments scheduled for 2 months and there is no way that we are going to miss it. It is crucial also that we see this doctor because this is the doctor who will be helping to manage my neurological condition and the pain that I am having from it. After all, I suffer 24/7 from the most severe pain that you can imagine. So it appears either way that I will be in Cleveland next week. It just depends when we are going and how long we will be down there for.
So…. As you can see there is so much happening. I am still going for surgery every Friday to be ‘cleaned’ out for my intestines. I desperately need this because not only does it make me more comfortable, but it also is removing the toxins and poisons that are spreading throughout my body and killing me. It is sad that I look forward to Fridays because of this surgery. But, it really does help because otherwise I walk around feeling and looking like I am 9 months pregnant and ready to give birth.
At least I have a ketamine coma in the morning. With everything that is happening, I am so relieved that I have it because at least I will be out of my misery for a bit. If I could live in a ketamine coma forever until I was fixed, I probably would. But unfortunately that isn’t possible. I desperately need to get to Mexico so that I can get the amount of ketamine that I need that can actually potentially “cure” me. Even though I can get ketamine in the US, I can’t get the amount that I really need because it is not FDA approved. But like always… everything comes with a cost and therefore I can’t have it done because it costs way too much money, as it costs over $100,000. To think… there is a treatment out there that can potentially “Cure” me and I can’t get it because I can’t afford it. It really hurts to know that. It is like having holding a bone in front of a dog and not letting him have it.
So that appears all that is happening. I will let you know more when I know more. Just wanted to write and let you know all that is happening so far. I can’t believe that the summer is basically over. It really hasn’t been a warm summer. I hope that doesn’t mean that it is going to be a bad winter. I can’t stand a cold winter. As it is the winter basically just left a little whole ago; it was the longest winter ever.
So many upcoming plans are going to be happening besides the surgeries. I have my dad’s birthday coming up as well as my dog’s birthday. My dog will be turning 9 and my dad will be 61. I really want to make my dad’s birthday as special as can be because he deserves it. He is the ultimate dad!! He is not only my dad, but my “best friend,” superman, and knight and shining armor!! I definitely would not have made it this far without him.
Thanks again for all your support. Until next time!
Well… I am officially home!! It has been a long two days, but I am officially home. However, I am having to go back to Cleveland on Sunday, August 24th, so honestly I don’t know why I should even bother unpacking. I am just going to enjoy this week at home. I am going to especially enjoy it because who knows what is going to happen when I go back to Cleveland. A lot has changed in plans! I just hope my body holds up for everything now!
Tomorrow is my usual Friday surgery. Going to get my intestines cleaned out because my entire GI system is paralyzed and therefore, nothing moves through it. I am getting intoxicated as a result of this and it is very likely that I can die from all these poisons spilling over into my bloodstream, as it is poisoning my blood, organs and even my brain. However, usually I am excited to go for this surgery and say “TGIF” because not only is it saving my life by trying to remove as much toxins as possible, but it is also making me more comfortable. Since nothing really moves in my GI system, I get so bloated and my abdomen gets so distended. I literally look like I am 9 months pregnant. I walk around the house waiting to either “give birth” or for someone to pop me!
In addition to the cleaning out of my intestines though, I also have to have the surgeons go down my esophagus and go into my stomach to do some biopsies. It’s all needed for the upcoming surgeries that are taking place in Cleveland. Hopefully everything will go ok, but I am scared because it is a double whammy tomorrow and my body is weakened already and has just taken a beating from this trip to Cleveland. Traveling is really hard on me and I literally just got home. I didn’t even have to time to rest and gain my strength.
Well… as I was saying, there has been a change of plans!! I was originally scheduled to have my colon taken out on August 25th, but due to how sick I am, there has been a change of plans. It just isn’t possible to do the surgery right now before some other surgeries take place first. It turns out that when I do have the colon removed, I will have to be hospitalized 14 days prior because of how sick I am. I can’t believe how long I will have to be in the hospital for… just to have my colon out. It will be at least 14 days prior, at least a 10 days in the hospital, and then I have to remain in Cleveland for at least another week to make sure that everything is OK and I am able to go home. However, after going for some more tests and meeting with the team, it was decided that I might be better going about it a different way instead of just jumping in and having the colon surgery. They thought I should have some other surgeries and procedures prior and then have it. So that is what we are doing.
This also scares me that I will have to spend so much time there because we don’t have the funds to do that. I know I sound like a broken record already and I know I am begging and pleading, but please help. We desperately are in need of help. We desperately need donations because we can’t afford treatment to save my life without your help. As it is, I already received a phone call from the Cleveland Clinic asking me to pay for the copayments and everything to the upcoming surgeries that I will be having and I didn’t even have them. They said that since I didn’t have the money today, I will have to pay it the day of surgery. Can you imagine?
I hate knowing that my life literally rests in the hands of others, but I am hoping that people will do what is right and help me! Just remember that I am appreciative of any donation and no donation is ever too small. I only wish there was a way to get on television or in the paper because this way I can maybe get more awareness to my story which will bring in more funds.
It turns out that when we go down on August 24th, it will be for other surgeries and procedures that are very important. To begin with, I will need to have ports and lines put into me. Not only do I need them for the actual surgeries for the transplant and for the removal of the colon, but also I need it to actually buy me time!
I will be having surgery on my heart, veins, and arteries to put these lines and ports in. However, I have to make a decision by tomorrow as to which type of port and line I want to use because I have an option of 3 different ways to go. They are going to use these lines to have emergency access to my heart, give me fluids, give me blood, take my bloods, give me medications, give me food, etc. With having these lines, I won’t have to worry about being poked all the time to get blood anymore. I also won’t have to worry about swallowing pills so much because they can be given through the lines, which will make it easier on me as well. It also means that I can be given more potent meds because intravenous meds are always stronger since they go straight into the bloodstream. But a big plus and hope is that these lines will be able to supply nourishment to me.
I always thought that when the colon came out that I would be able to gain weight and hopefully be able to get back to a somewhat normal weight. However, I was told that the chances of that happening is basically nil. The doctors said that I am so far behind that I probably won’t ever be “normal” weight again. The point of the colon coming out is to make me “more comfortable” and to help buy me time until I have the actual transplant.
The real cure to this entire puzzle is to have the transplant. If I had the transplant, then I would be able to most likely gain the missing weight that I am missing and be more of a normal weight. I was kind of upset about this because I was hoping that the colon coming out would help me be able to eat again and able to gain the missing weight. After all, I hate the way I look and wish that I would be more normal looking. I look like an emaciated skeleton.
The doctors did say that the key to the puzzle and to keeping me alive is TPN. They said that I desperately need this in order to keep me alive and to hopefully buy me the most time. TPN is “total parenteral nutrition” and it is dripped through those lines and ports that they are placing into my heart. However, TPN is extremely dangerous and you can’t be on it for long. Therefore, it is really important that I get the transplant as soon as possible so that I can get off the TPN. (CLICK SHOW ALL TO READ ON)
TPN is very risky. You can have mechanical complications from the catheters that will result in pneumothorax, vascular injury with hemothorax, brachial plexus injury or cardiac arrhythmia. However, venous thrombosis is one of the two most common problems that occur after central venous access is established. The other is infection. Venous thrombosis is associated with significant morbidity rates.
Having TPN is not a cure. It is only a “band aid” to help buy my some time until they figure something to work. Yet, I have had TPN before a couple of times and I have failed it. So we are not sure if it is even going to work this time around. We are hoping that it will though.
I have to decide which type of line I want to place into me. We are hoping that the TPN will work through these lines, but even if it doesn’t we still need it for other reasons. There are 3 choices that I have. I have a choice of a line that goes through the heart and jugular vein, one that goes through the sub clavicle and the vena cava, and then one that is called the PICC and that goes through the arm and then into the heart through the vena cava. Each comes with their own plus and minus. I am really tending to think I am leaning towards the PICC because it comes out of the arm and looks nicer, but if I go with the PICC, it will mean that I will have to have another line put into me such as a line that goes through the jugular and into the heart because this PICC line won’t be sufficient. But that is ok because it will only be there for the time I am having the surgery.
In addition to this surgery, I am also going to have surgery to “clean” me out. I have lots of toxins in my system since my colon and GI system is paralyzed and even though I go every Friday for the surgery to “clean” it out, they are going to do a more invasive job because they are going to do it under general anesthesia.
Another surgery that will also be having is a surgery to deal with the infection and such that is lurking in my mouth. I have been on antibiotics and I have been continuing to suffer. I desperately need to have lots of surgery in my mouth and this way they will do it then.
Finally, I had a CT scan during this past trip to the Cleveland clinic and it appeared that I am drowning in my fluids. So I will also be having my lungs cleaned out as well.
At least when I met with the doctors and the anesthesiology team when I went to Cleveland, I got to meet with the actual “team” that would be in the room during the operation. Usually they don’t know the anesthesiologist who will be on the case until the last minute. However, I was fortunate enough to have the anesthesiologist say that he was going to take the case because of how difficult I am and how he met with me and knows the case and such. So I am really glad because I really liked him and felt comfortable with him being there.
So that appears all that is going on. Not to cut it short, but I am not really feeling well and I am having to get ready to leave for the surgery today. My right arm still hasn’t officially “woken” up and so I am still battling a sought of sleeping arm. Never a dull moment.
Thanks again for all your continued support and encouragement. I would definitely have not made it this far without you.
August 14, 2014
Well I am officially in Cleveland! I finally made it here! What a day it has been. I can’t believe all that has happened today because my life is like a soap opera… never a dull moment. From the moment we left the house to start this trip… nothing went right!
I should have realized that today was going to be a bad day from when we first began our trip. Right from the beginning it seemed like this trip was doomed. We basically just made our plane and we are so lucky that we did because we couldn’t afford to miss it. We had appointments scheduled in Cleveland today and therefore, it was imperative that we made the plane because the next flight afterwards would have made us miss all our appointments. We hit absolutely no traffic whatsoever to the airport. However, just as we were approaching the airport, there was so much traffic because not only were there was emergency vehicles blocking off lanes so that they could take care of a car breaking down, but of course everyone passing in their cars had to stop and look! The way that there were emergency vehicles blinking and people were stopping and looking… you would think there was a huge accident or something. But guess what? There was really nothing going on. It just appeared that a car broke down or something. In fact, when we were at the skycap checking in our suitcases, everyone was even talking about what on earth that “hold up” was. But you know “New Yorkers”… everyone has to look if they see blinking lights! But thankfully we made the plane!!
What a trip we had though. Between the traveling, the massive infection that I am currently suffering from, and then my overall condition… I didn’t handle this trip to Cleveland very well. My disease really stirred up and my body really was shutting down on me. Even when we got to Cleveland, the impact that the traveling took on me was enormous. My dad could barely keep me awake. When we spoke to the doctors, the doctor said that it is because I am getting so much worse and I have all those poisons and toxins in my bloodstream and organs that are further complicating things. All those poisons and toxins are literally killing me and that is why I am in such need of having my colon taken out and of the transplant. I am weakening so much and I can’t tolerate anything stressing out my body… even a trip on a plane to Cleveland.
When we got to Cleveland, I really didn’t have time to rest. I couldn’t even open the two boxes that the front desk said that I had delivered for me earlier. Had to get straight over to the hospital. Thank goodness though that the hospital is only literally next-door to the hotel. In fact, if you think of the letter “I” the top and bottom of the “I” is actually the main hospital and all doctors’ offices. The middle part, which is the part that connects the two hospitals together, is the hotel. If you don’t want to walk outside to the different buildings, they are interconnected by skywalks.
So even though I am not technically “admitted” into the hospital, I am still really in the hospital. The Cleveland Clinic is one of the BEST hospitals in the United States and they really don’t keep patients in the hospital. They really try to minimize the stay of each patient in the actual hospital. They much rather treat you on the outside. In addition, with my disease, the doctors rather keep me out of the main hospital and being officially admitted as much as possible. That is why even when I am “home” … doctors try to keep me out of the hospital as much as possible. They are afraid that I am going to catch an infection or something because I have no immune system and so susceptible everything. They also are afraid of how I will be treated because I can’t be treated like a typical patient. The slightest wrong move can cause havoc on me.
I really came this week to Cleveland to have the final tests performed, to have the pre-surgical testing, and to meet with the team to make the final preparations. I have to meet with anesthesiology and internal medicine to not only be ‘cleared’ for surgery, but they have to see how they are going to put the Central Line in me because I can’t have this massive surgery without it. It is way too risky of an operation in order not to have it in me because it is the Central Line that used to give medicines, fluids, nutrients, or bloods.
I had so many appointments today including a CT scan of my lungs and a stress test of my heart because the doctors needed to know how my heart would function during this operation. After all, this operation is extremely dangerous and will take a huge toll on my body. It is the most dangerous of all transplants and is so rare and dangerous that only 6 hospitals really do it in the United States. So they really needed to see how my heart would do.
However, like I said before I was really ill from the trip and from everything I was suffering from. No matter where I went, I had a difficult time staying awake and therefore, my dad was literally carrying me everywhere. I slept before each test, during each test, and after each test. It was horrible.
One test that to definitely go for was the Stress Test. However, they had to stop it right before they gave me the intravenous drug because they said it was too “dangerous” for me. They said that they couldn’t perform this particular stress test because they didn’t know the exact amount to give me since I am so underweight and ‘small.’ They didn’t want to ‘kill’ me and they told me that the slightest amount that went over the amount that was needed could do me great harm. So they said that I wouldn’t be able to have this particular test and a different one would be needed to be used.
However, the problem is that I am supposed to be leaving tomorrow afternoon to go home after I have my other appointments. Therefore, I really don’t have time to have any time extra to fit in any other tests. So I don’t know what is going to happen. I really can’t afford to stay longer than tomorrow because we aren’t prepared to stay longer, as we don’t have the funds, medication, clothes, etc. and therefore we cant miss our flight. But then again I don’t want to postpone the surgery either, which is supposed to taken place august 25th because we definitely cant afford for that to happen with all the poisons running through my body and the way it is shutting down. So I don’t know what is going to happen. I guess I will have to leave it up to the “team” tomorrow when I see them! (CLICK SHOW ALL TO READ MORE)
It really stunk not being able to have the stress test especially because not only did I really need this test for the upcoming surgery, but also I couldn’t eat or drink all day because of it. So I went the whole day without eating or drinking for nothing!! I really wanted something too… especially since I was on the plane and everything, but I couldn’t have anything. To think… all that suffering for nothing! When I was done with the stress test, the doctors felt so bad for making me starve for no reason that they were willing to get me anything and everything to eat.
Like I just said, I have an appointment in the morning with my “head” doc and I also have an appt with interventional radiology. So we will see what will happen at this point.
To complicate matters more, my right hand is kind of “dead” and won’t wake up. I have gotten this before but it has always been occurring to my left arm and hand. The doctors don’t know what causes it and therefore, I get really scared because I don’t know how long it is going to last or if it is even going to get better. Fortunately the other times it has all improved, but you never know. All the times that this has occurred, I have woken up and it has felt like my hand has fallen asleep. Then I can’t wake it up and it is so numb and hard to move because it had fallen ‘asleep.’ It is almost like having a ‘dead’ hand. Then I get this tingly all throughout my hand like it is starting to wake up, but it just stays there like that… never getting better. In the past it has lasted a couple of days, but you never know if it will always be that way. I get so scared from it happening not to mention how debilitating it is because you can’t really use it like I need to.
In addition, we also don’t know if I am having a reaction to the antibiotic that I was given to combat the infection that I have. I noticed some red marks on my neck and shoulders this morning, but I thought it was just the way I was laying or maybe from rubbing it. However, when I looked in the mirror later on today, I saw that there was actually a rash going on. We don’t know how I got it or if it is actually related to the antibiotic. So we really don’t know what to do. We already know that this antibiotic makes me feel nauseous and such especially since it is such a high dose because the infection is so bad. They really have to knock this infection out because not only do I need to get rid of it for the upcoming surgery, but it can really severely cause a lot of problems and even potentially ‘kill’ me because I already have all those toxins, poisons, and bacteria running through my body from my failed GI system. So it is just making my body further weakened.
So I really had some day today!! It was really a tiring day and things were just not going well. Of course when I got back to the hotel, I still continued to ‘sleep’ and if it wasn’t for my dad waking me up at 7:30, I probably would have slept through the nite. However, my dad said that we had to go eat dinner and I had no choice. I pleaded with him to miss dinner tonight because I wasn’t feeling well, but of course I lost the battle because he insisted that I couldn’t afford to lose an ounce. So I was dragged to the restaurant to eat.
Just to finish up the wonderful day, we couldn’t even watch TV tonight. We ended up having a storm here in Cleveland that knocked out the satellites. My dad said to me “Better watch out that the power doesn’t go out too.” But I was like “Did you ever hear of backup generators?” So you know what he said? He was like “Maybe they don’t have!” I was like “I am sure that they do especially since they are a top-of-the-line hospital.
Oh yeah… just as expected when I got here my packages were here waiting for me. Dad couldn’t believe that I didn’t have them shipped to the house instead. But they are sooo cute. I keep cuddling with them. What a way to make my belly feel better.
Wanna hear something hilarious? We needed ice for our sodas and my oranges. So you know what my dad did? He went to the ice machine with a bag of ice on top of just filling up the regular ice bucket. He brought back so much ice that he emptied the entire machine. So me being my stupid self said to him “you better call the front desk and alert them to the fact that they have to refill the machine because its empty.” I was thinking that he should do that so that I could have my ice later because I knew I would need it. However, little did I know that all you had to do was ‘wait’ for the machine to make more? My dad was like “You don’t have to call… you just have to wait for the machine to make more!” I am so naïve!
To top everything off, there is a lot of press going on here since Robin Williams died. Apparently Robin Williams had 2 heart valves replaced here at the Cleveland Clinic and therefore, they are saying that this could have caused his death. They are saying it because according to the Clinic, “major heart surgery often leaves patients with depression, which can sometimes prevent you from leading a normal life."
So that appears to be all that is happening. It’s going to be a busy day tomorrow (Wednesday). I just wanted to write a bit and let you know all that has occurred so far. I wonder what will be the outcome of the upcoming surgery because we are so close to having it done and yet we have all these complications. I know they won’t do the surgery unless the infection is definitely cleared up, but I am hoping that the scan won’t hold things up further. I also hope that they won’t have me make an additional trip here just for this scan because besides there is no time, I can’t afford it and it takes too much out of me. I get too sick from the traveling and I really can’t do it. I hope that the next time I come back here it is for the surgery.
Well… Thanks again for all your continued support and encouragement. Please continue to pray for me and I will let you know what happens! Thanks again for everything. I can’t tell you how much I appreciate all that everyone is doing!! Knowing that I have a “support team” really makes a HUGE difference in fighting this.
August 12, 2014
Well… I am writing to let you know that in a few hours I am off to Cleveland Clinic. I am only hoping and wishing that all goes well because I know that I have a long road ahead of me especially now. There is never a dull moment in my life. As if my life isn’t hectic enough, I was just thrown another bump in the road today that might have to result in the transplant being delayed. I am only hoping that it doesn’t though because I am literally running out of time. But you know MURPHY’S LAW? Well… it should be renamed to be FALLON’S LAW because anything that can go wrong will go wrong.
I can’t believe all that is happening! Never a dull moment in the life of “Fallon!” I am supposed to be leaving in a few hours and I am really not feeling well. I am sicker than ever because besides my usual illness, I just had emergency surgery today because I have a massive infection going on in my mouth and jaw.
I have been having some pain in my mouth, jaw, and teeth lately, but these past two days have really been horrible. It got to the point this morning that the pain was unbearable. For me to say that the pain was unbearable while on all my potent pain medications such as ketamine, dilaudid, methadone, morphine, etc., I wonder exactly how bad this pain actually is. This infection has to be MEGA if it was hurting me the way it was with all these meds. I really don’t complain that much when I am in pain because I suffer with pain 24/7. However, the pain that I was in this morning was so bad that I was hysterical. I knew that I needed help.
Thank goodness I went to the oral surgeon when I did. It turns out that I have a massive infection in my tooth and jaw. However, we had such a day dealing with it. Usually when I have to be worked on with something like this, I have to be under general anesthesia. Yet, we really didn’t have that as an option and all we could use was nitrous oxide and lots of novocaine. However, due to my condition, it was not helping me at all. They turned the gas all the way up and they gave me shot after shot. Even after 6 shots, they couldn’t get me numb. I was screaming while they tried to work on me. I felt so bad for my mom because she was the one trying to hold me down. I was in so much pain that I was literally holding her hands so tight that I was drawing blood. Her hands are all swollen now because of all that happened.
But like I said before thank goodness we went to the surgeon when I did because if I didn’t I probably would have died. The surgeon was on the phone constantly with the Cleveland Clinic because he of course needed their input since they are in charge of my condition and I am going to be undergoing massive surgery with them. The Cleveland Clinic said that with all the toxins and poisons going through my body because of my failed GI system and such, I am lucky that I am alive still.
Due to my failed GI system, I have all these toxins and bacteria leaking from my GI system (especially my colon) into my bloodstream and it is spreading to all my organs including my brain. As a result, it is literally poisoning my body and causing me to die. That is why I need the transplant surgery at the Cleveland Clinic as soon as possible. We have to stop these toxins from poisoning my body because it will end up killing me. That is the reason why my brain is “foggy” and why I am sleeping a lot.
So to have this active infection on top of being poisoned by this bacteria and toxins that were already occurring, I am in really bad shape. They immediately wanted to put me on high dose meds in order to help contain the infection. Yet, with all the meds that I am already taking, it was extremely difficult to do. I take over 50 pills daily and it was very difficult to find a drug that wouldn’t interact with the others. They also needed to give me pain meds as well, as the current pain meds that I was already taking weren’t cutting it. So the surgeon has been talking to all my doctors trying to figure everything out. What a problem!!
A bigger problem though is this infection and how close we are to transplant, as I am supposed to be going in the morning to Cleveland Clinic for pre-surgical testing and to finish meeting with everyone so that I can be prepped for the upcoming massive surgery on August 25th. At that date, they will be removing my colon. It is a massive operation, which will take over at least 10 hours to complete. However, after the colon is removed, all bets are off as to what will end up happening. They don’t know if the colon is the bulk of the reasons why my body is being poisoned or if it is another part of the GI system that is causing it. Depending which organ it is… it will determine how soon I will have to undergo the huge multivisceral transplant. But they were hoping that I would be able to get my colon removed and they would be able to wait a bit to have the transplant so that they can try to get me a bit stronger for the transplant because it is a very dangerous transplant to have. They are also hoping to be able to wait a bit so that they can ‘learn’ all that they can about their ‘enemy,’ which is my neurological disease and autonomic dysfunction.
Like I stated in the previous message, my doctor wants to know his ‘enemy’ before he transplants. He is an excellent surgeon and wants to be prepared for anything that could happen. Therefore, has sent out other doctors to do research on my illness and he is even calling other doctors who are knowledgeable out of retirement. Doctors say that he is like a ‘terrier’ in the sense that once he gets his teeth into something, he doesn’t let go or stop until he gets what he wants.
It is really important to know all that he can about my illness because this transplant is so very dangerous. In fact, it is the most dangerous transplant to have and only 6 hospitals in the country do it. I need a new stomach, small and large intestine, pancreas, and spleen. However, if they find that the toxins and poisons are coming from something else after the colon is removed, I will have to transplant immediately.
After speaking with the Cleveland Clinic, they said that I would not be able to have the transplant or even the massive operation that I am scheduled for to remove the colon at the end of August. This surgery is extremely dangerous as it is and they expect to have lots of complications already as well as an extremely difficult time recovering from it as it is… they don’t need further complications. So the surgery might be cancelled unless I can overcome this infection. (Please click NEXT to continue)
This infection is very serious that I have in my mouth. The problem is also that I don’t absorb medications like a normal person. So despite being on a high dose, we don’t know how much I am actually absorbing. I can literally take pills and then 12 hours later when I vomit, I can throw up the entire pill in its “whole” form so it isn’t dissolved. In addition, I am extremely hypertensive so that any “minor” problem is a “huge” problem. I am not like a regular patient, as everything in my life is so much magnified.
So we are keeping our fingers crossed that this infection will go away and not stand in the way of the surgery. It is just another bump that is added in the road along with the funding bump that we have to get over. But in the meantime, we are heading in the morning to Cleveland Clinic to finish everything so that we are all prepared for the upcoming surgery that will hopefully be taking place the last week of August… providing that there is no infection and we have the funds.
So our flight leaves in the morning and it will be a busy 48 hours. We have so many doctors to still meet because since my case is so complicated, it takes an entire team in the operating room to handle it. They literally are going to have a doctor in every specialty in the room. I am also going to be meeting interventional radiologists because even they will be needed to put a central line in me for this surgery.
Besides meeting with the docs, I am also having some final tests performed so that they are fully prepared. Besides the usual tests such as the CT scans and x-rays, I am also going to undergo a stress test so they can really test my heart out. They already told me that I am going to hate this test because it is probably going to cause the autonomic dysfunction to stir up. Gosh… sometimes I think the autonomic dysfunction is the worst part of the entire disease.
What stinks is that I can’t eat or drink absolutely anything before these tests and I will be flying on a plane! I don’t know how I am going to manage especially not drinking when I am going to be in the air. The tests aren’t until 2 PM and therefore, I am literally going the entire day without eating or drinking especially since I am going to be leaving for the airport at 4 AM. Gosh… I am going to be dying of thirst and hunger. Some might think it is no big deal because I can’t really ‘eat’ or ‘drink’ anyway. But it is a big deal for me because even though I really can’t eat or drink because swallowing is extremely difficult and I also vomit it back up, at least I get something into me. Now I can’t get ANYTHING into me. I always find that when you are told you can’t have something, you are always more thirsty and hungry than if you weren’t told you couldn’t have it.
So we are off. Just wanted to let you know the latest! At least I know when I get there, my SNUFFLES will be there waiting for me. There is a white SNUFFLES being sent there thanks to my mom. Even though she can’t be there in person… she is sending me a bear so that I can always have something to hug. This way whenever I need a ‘hug’ from her, I can hug the bear.
I am in love with GUND bears and I am in the process of collecting all the different GUND SNUFFLES. I love the SNUFFLES because besides them being extra cute, they make such great “cuddlers”. With my stomach beign the way it is… they are in the perfect shape and are made in the perfect way to hold so that it helps with the stomach pain. I only wish I still had my original SNUFFLES. The SNUFFLES today is celebrating the 30 year anniversary.
In addition, I wonder if I am going to see another one of those “waterbugs!” Gosh… I will never forget how I was walking out of the hotel when we were leaving for the airport and one of those things ran right in front of me. It scared me so much. I never saw a bug that big! Of course I had to take a picture of it and show my dad. My dad being the expert that he is in pest control told me immediately what it was!
I can just imagine how much this trip is going to cost this time. With all these doctor appointments and tests… I don’t know how we are going to afford it and then be able to come back about week later for the huge surgery, which will entail us being in Cleveland for at least 3 weeks. That is why it is imperative that I get as many donations as possible because we cannot afford it by ourselves. So please continue to spread the word of my website at www.gofundme.com/FallonMirsky
so that I can receive as many donations as possible. Remember... no donation is ever too small.
Please continue to pray for me because I am going to need all the prayers and support to overcome this. I need to be stronger than ever because I have to beat this infection now too!
Thanks again for everything.
August 9, 2014
I just figured I would write and let you know the absolute latest because I officially received notification from Cleveland that part one of the transplant is ready. Yup!! I received the call tonight!! I am so very nervous and I to be honest, I really don’t know what is going to happen because of course this means I need to get there ASAP and we don’t have the funds on hand. My head is literally spinning so fast around that I don’t know how to stop it. I am so scared. I am scared to have the surgery because I know how ‘massive’ this surgery is and scared not to have it done because I know that without it I will die.
I can’t believe the phone call finally came in tonight to come out to Cleveland for the first part of the transplant. I knew that it was ultimately going to happen, but I honestly didn’t think it was going to happen so fast. I mean, I didn’t expect it to happen so soon especially since I literally just got home from the Cleveland Clinic a few days ago. I guess this is what the doctors at the Cleveland Clinic meant when they said that what I was going through and having was “life threatening” and a very HUGE “emergency.”
When I had went to the Cleveland Clinic this past week, I had found out so much information… more information than I had ever known. I knew that I was sick before I went to the Clinic, but I never realized how ‘sick’ I really was until I went. When they explained everything to me, I finally understood everything that was happening in my body. There were even a lot of misunderstandings that were occurring in my disease and body because I went to doctors that were not as knowledgeable as the doctors that I am going to now in the Cleveland Clinic. Cleveland Clinic is absolutely one of the BEST hospitals in the country. From actually attending the hospital, there is no question in my mind why that is the case. The entire team of the hospital from the nurses to the staff to the doctors is completely unbelievable. They are so nice and knowledgeable. They don’t just treat you like another patient. They actually are about each and every patient. They know things about illnesses and such that no other places know about. Therefore, they take on cases that no other places will. No wonder it is the Cleveland Clinic that is known for ultimately saving people with life-threatening diseases. I only hope that I will be as fortunate.
When I went to see them a few days ago, I finally learned that it wasn’t the medicine that was making me so ‘tired.’ Besides all the pain that I have been suffering from that has been unbearable, I have been really tired lately and been sleeping a lot. I have also been having a feeling of my brain feeling a bit “cloudy” as I didn’t feel like I was thinking as clearly. A lot of doctors have been attributing all that to the medications that I have been taking, as I do take more medicine than anyone can believe. I take over 50 pills daily and it would certainly kill a horse. Doctors are even amazed that someone the size of me could withstand taking so much. But even taking this amount of drugs, it doesn’t even really have any affect on me. Therefore, I did find it strange that the meds were supposedly causing all this ‘tiredness’ and ‘cloudiness’ all of a sudden when I have been on them for such a long time. It just didn’t make sense. It wasn’t like we really changed anything. You know?
Well… it appears that due to my illness and severe gastroparesis, my organs have basically ‘died.’ My GI system doesn’t function any longer and in fact, I am being intoxicated and poisoned by it. It turns out that my colon is especially toxic and all the toxins are pouring over into my bloodstream and spreading to the rest of my body, which is causing my body to shut down and fail. The toxins are causing me to have cirrhosis of the liver and it is even going to my brain. That is why I am so tired and feeling so cloudy. As it is getting worse and worse, I am feeling worse and worse. The more it continues, the worse it will get and it will ultimately end in coma and in death. Therefore, I desperately need a transplant to get rid of these toxins before it is too late because they are poisoning me and will kill me. Yet, a transplant of the GI system is extremely dangerous. In fact, it is the most dangerous transplant you can have. Only like 6 hospitals in the country perform this operation. I need a new stomach, small and large intestine, spleen, liver, pancreas, etc.
However, since I have this autonomic dysfunction and also this neurological disease, we don’t really know how my body is going to function to the transplant either. Therefore, the surgeon is kind of hesitant to transplant me because he doesn’t really know and understand completely the “enemy.” Yet, he has told my dad and me “if I was his daughter, he would transplant me immediately.” Yet, he said, “since he doesn’t know the enemy completely, he wants to take it slow and do it in steps, as he learns as much as he can about how my body will react to the transplant and what exactly to do in terms of precautions because of how ‘sensitive’ and reactive my body is to everything that is done. “ As a result, he is going to be taking the colon out first because that appears to be the most toxic organ of the body at this time while he learns as much as he can about my illness.
Therefore, the first part of the transplant will be removal of the colon. I will just be missing the colon while we wait for the FULL transplant, which I will then receive the other organs. He will also be learning all that he can about my illness during this time. The doctor is doing tons of research. In fact, he is actually sending out other doctors to do research as well on my disease. He is calling all the top doctors in the world regarding my illness and even calling doctors that are in “retirement” out of retirement that might be familiar about my illness. The doctors all him a ‘terrier’ in the sense that once he gets his teeth into something, he doesn’t give up. I am only hoping that he doesn’t give up on me because I am so very sick. (Keep reading for more… click NEXT)
The doctor is especially awaiting for one particular doctor to get back to him. I gave him a few doctors to contact that might be able to help him, but the doctor is particularly waiting for Dr. Schwartzman to call him. We are only hoping that my doctor, whose name is Dr. Kareem, will be able to contact him because he has retired this year. Dr. Schwartzman is supposed to be one of the top doctors in my neurological disease and was practicing at Hahnemann University in Pennsylvania. When you wanted to see him, you had to literally wait at least 2 years to see him because that was how long the waiting list was to see him. I had seen him, as he was my doctor as well and Dr. Schwartzman also confirmed when he had seen me that I was one of the worst cases that he has ever seen in his life. As he was also doing research in my illness, he also took my blood so that he can use me in his research. He had told me that “we may not necessarily be able to help you, but you may be able to help others in the future.” So… of course I had no objection of giving him my blood to study because I would do anything to help others and so that others wouldn’t have to have the same misfortune of suffering from the same miserable fate as me.
It turns out that Dr. Schwartzman had just retired this past summer. However, it turns out that it is essential that Dr. Kareem talk to Dr. Schwartzman because even though I have given him other doctors who might be able to help him, it is Dr. Schwartzman who actually did research and found a clear link to what is happening in my GI system to my neurological disease and autonomic dysfunction. He actually saw a linkage between the toxins and the intoxication that is occurring in my body to the neurological illness and autonomic dysfunction and therefore Dr. Kareem wants to know about this and ultimately what will happen when I am transplanted and everything. I knew that Dr. Schwartzman did research in my illness, but I never knew that he actually found a linkage in this. So I am only hoping and praying that Dr. Kareem will be able to speak with him because he can be a very important piece to the puzzle.
Dr. Schwartzman also knows and understands how my disease spreads. Abnormal signals cause change in neurons and causes the loss of magnesium blocks. This causes calcium to enter the cells. When this occurs, very bad stuff happens and the disease manifests and spreads. Dr. Schwartzman is a crucial piece to my illness because he discovered how important Ketamine is to be given during the surgery because it is the only medicine that will help keep the neurological disease and autonomic dysfunction at bay. It is an NMDA receptor that will block the disease from spreading.
But in the meantime, I need to definitely have the colon taken out, which is the first part of the transplant because I am literally dying. I am literally being poisoned and if it doesn’t come out, I will soon die because it is literally poisoning my entire system. However, we don’t know how my body will react. We don’t know if all the toxins and poisons are just coming mainly from the colon or if it is really coming from the other organs as well. If they take out the colon and they find that the toxins are coming from the other organs as well, they will have to then transplant immediately. So all bets are off between how much time they will have after they remove the colon and how much time they have for the rest of the transplant to occur. The doctors really have no idea how my body is going to react or what is going to happen after the colon is removed.
So I knew that the colon had to come out as soon as possible because I would die otherwise, but to be honest… I wasn’t expecting it to be so soon. I literally just got back from Cleveland a few days ago… not even a week and I am already getting the call to come back for the surgery. I am so scared. I am scared because I don’t know how on earth we are going to afford this. It is so very expensive and we don’t even have the funds to go back to Cleveland let alone stay in Cleveland for the surgery and have it. Even though the surgery is somewhat covered by the insurance plan, we still have copayments, deductibles, living expenses while we are there, traveling expenses, etc. I don’t know how we are going to do this especially since it isn’t just a matter of being there one day. Instead, we got the phone call that they want us back on Tuesday for appointments for pre-surgical testing, which will be taking place that day and on Wednesday. They will then allow me to go home and I will then return on Sunday, August 24th to have the massive operation. When I come for the operation, they want me there for about 3 weeks about. I don’t know how on earth we are going to afford it especially since my dad won’t be working during that entire time, which means no income at all.
Gosh… when I got the call today, they told me that they needed me the 12th for testing for the upcoming surgery. When they said that, I automatically thought that they meant September 12th. Little did I know that they meant August 12th, which is only literally in a few days. How on earth am I going to come up with the necessary funds, make the traveling arrangements, and get there in such a short amount of time. I hate Fridays because it always seems like all the big stuff happens on Fridays because you can’t do anything really on the weekends. I really can’t contact doctors or make plans or do anything until Monday and by then… it is literally too late because I have to really have all arrangements made by then since I have my first appointment on Tuesday afternoon. I have no idea what we are going to do. I am so scared but all I know is that we have to find a way of getting funds. That is the priority at this point because we need plane tickets, hotel arrangements, etc. Obviously they aren’t going to give me those for ‘free’ or because my name is “Fallon!”
So we are really scrambling looking for funds and hoping that we will receive some donations. They are so desperately needed. If you can please spread the word that I need to get to Cleveland for part one of this massive transplant surgery, I would really appreciate it. Of course my fundraising website is www.gofundme.com/FallonMirsky.
NO donation is ever too small and all donations will be MUCH APPRECIATED!!
Speaking about this massive surgery, I am really really nervous. I spoke with the doctors today and I told them how nervous I am. I told them that I don’t doubt their credentials or their ‘ability’ but I am really scared about how my body is going to react and such especially since my body is so ‘sensitive’ and reacts to literally everything. I am especially scared because I know how dangerous this surgery is and how it is really life threatening. All I hear from all my other doctors and other doctors who my dad speaks to is how “massive” this surgery is. In fact, my dad’s cardiologist even told my dad “to prepare just in case things go in the other direction and things don’t turn out so good.”
It is so dangerous that they are putting lines in me everywhere. I told the doctors that I have had surgeries before and I never had to have lines put in me like they are doing now. But the doctors said that this has to be done because I never had surgery like I am having now. They keep saying how “This is the most ‘massive’ surgery I have ever had!” I keep saying that if I hear the word “massive” one more time I think I am going to go through the wall. I can’t hear it anymore. Therefore, they are going to be putting in central lines and everything. Thank goodness I will be technically ‘asleep’ when they do this because this is not the most pleasant thing to occur. (Keep reading for more… click NEXT)
A central line is a long, thin, flexible tube used to give medicines, fluids, nutrients, or blood over a long period of time, usually several weeks or more. They are hopefully going to be able to use just a catheter in the arm that will be threaded into a vein and go until it reaches a large vein near the heart. They are definitely going to need it for ‘access’ for medicines and fluids, but they are also going to try to give me TPN as well through this. I have had TPN multiple times in the past, but I have failed it. However, I never had TPN done at the Cleveland Clinic and I am not working with Dr. Steiger, who happens to be the founding father of TPN. So, we are going to try it again since he happens to be the most knowledgeable and best doctor in getting TPN to work. The worst thing that could occur is that it doesn’t work, but at least we will give it a shot.
The doctors would love to be able to have the TPN work because of how small and fragile I am. They would love to give me nutrients before the surgery and afterwards because it would help give me strength and help me recover. This is huge surgery and I will need all the strength that I can have. I will definitely have a huge road ahead of me with this surgery.
This surgery is hard on anyone, but it is especially going to be hard on me considering the fact that I have the neurological disease and autonomic dysfunction. Due to my neurological disease, I have a hard time taking a deep breath, as I have Dystonia of the chest wall muscles.
I am only hoping that while this first part of the transplant is just to remove the colon, I am only hoping that I won’t have to have a colostomy bag. I am deathly afraid of having a bag. When I told the doctor how I really didn’t want a bag, the doctor said to my dad and me “he is not a bag guy!” Of course my dad got the joke immediately, but I was a little delayed on the joke. The doctor said that I have a 99.9% chance of not having a bag because he really would hate for me to have a bag because it would most likely only complicate things. It would lead to another surgery and could lead to another potential complication and can lead to more chance of infection and other things. But nothing is 100% and he said that even though he doesn’t foresee it happening and hoping it won’t, if it did have to happen… it would only be temporary. So at least that is a good thing because I really didn’t want one. At least I also know that the worst-case scenario of getting one is that it is only ‘temporary’ and it will go away. That is another reason how I know the Cleveland Clinic is so amazing. They are the only people who are willing to do this surgery on me. Also, they are going to be doing it without a bag.
I also asked the doctors how they are going to ‘prep’ me for surgery because obviously they can’t clean my bowels and such. Usually when people go for GI surgery, they do a whole bowel-cleansing regimen. Yet, in my case, it won’t work because my GI system is essentially dead.
So the doctors said that they really don’t even want to do anything that is going to ‘stress’ my body out any further than it is going to be during the surgery. They know it is going to need all its strength and everything for the surgery and therefore, they don’t want to waste trying to empty by bowels and everything by having me drink stuff or through enemas or anything like that. Therefore, they rather manually do it during the operation. It is a bit more risky because I will have all that other stuff (i.e. food, meds, etc.) to deal with and it could harbor additional bacteria, but this is the best way to go.
I am really keeping my fingers crossed that things go according to plan and things will go as ‘smoothly’ as possible. The operation is over a 6-hour operation. Yet the doctors have even said that they don’t know exactly what will happen after the colon is removed because it will change everything. I am putting all my trust into them because these doctors and the hospital seem like the best place to be. When I have spoken to other patients, they have said how “great” this hospital and doctors are. They have even said that it is only this hospital and doctors that have SAVED their lives. If it wasn’t for this hospital, these patients claim that they wouldn’t be living. I only hope that I am as fortunate. After all, this hospital takes on cases that no other hospital will. They are known for doing famous surgeries that no other hospital has done such as the face transplant surgeries and others. They do things there that you would never imagine or ever hear of. So I am really trusting them with my life.
When I spoke to the other patients, they have nothing but praise for the Cleveland Clinic. They said that the hospital and staff is simply amazing. Of course I will be kept in the ICU. The ICU is supposed to have a ratio of 2 patients per patient. Each patient is also supposed to have his or her own room and there is a pullout sofa for their caretaker. I am really glad about that because I am hoping that my dad will stay with me in the hospital because I am really petrified to stay alone. The patients say that the rooms and the care of the hospital is like being in the hotel. They said that the nurses are very attentive and they don’t make you wait for anything. They even go around massaging you so that you don’t get stiff and everything. They said that they do whatever they can to make you as comfortable as possible.
When I go for the surgery, unfortunately both my parents can’t be there together. We don’t have the money to have both parents to be there and therefore, my dad will be with me while my mom stays home. I am scared for both. I am scared for my dad because he will be there alone and if something should happen, I don’t want him to be alone. I am also scared for my mom because she is left at home and not knowing what will be taking place. She will be blinded and only left to knowing what is known by the telephone ringing. I only wish I could have both my parents there especially since it is so dangerous and everything, but I know that it is not going to be possible. But I know that even though both my mom and dad won’t be there together, I will be in constant contact with my mom.
Not only will I miss my mom, but I will miss my pets as well. I literally have to pick up my life and go to Cleveland. I will have no comforts from home except for my dad. But thank goodness I will have my dad. My dad is not only my “dad,” but he is my best friend. I know that he won’t let anything happen to me. Thank goodness for SKYPE though because at least I will be able to be only a video chat away from the comforts of home. Perhaps that is one of the reasons why Cleveland Clinic is so nice. They know that patients come from all over the world to this famous place and they leave their comforts of being at home. Therefore, they want the hospital to be as “comfortable” as possible for each patient and to feel like “home” as well!! (Keep reading for more…click NEXT)
So like I said before… I am supposed to be heading there this week, as I am going to have to meet with interventional radiology and anesthesiology this week to go over everything. I will also have to have all my pre-surgical testing as well. However, like I said before, it is of course contingent on the fact that I have the funds because as of right now there is no funds available especially since we just back from Cleveland a few days ago and we have had no time to “regroup” our funds together. My dad hasn’t really been able to work much since we gotten back and we haven’t really made up for him missing the work that he missed when we were gone last week. To make matters worse, this is also his “busy” time of the year and I feel really bad making him miss work. This is the time when he makes the most of his money and if he isn’t here to work, then obviously the money isn’t going to be made. I know how desperately we need the money too because we literally can’t afford any of our bills. The bills have snowballed out of control and we can’t pay for my treatments anymore. We can’t even pay our mortgage and even have difficulty putting food on the table. So, we know how important this time of year is for us because of how much money can be made. If he misses it, it is missed until next year. So I don’t know what is going to happen. I just feel really bad because I don’t want anything to happen to my family because of me. They have suffered enough because of me.
So the schedule is supposed to go like this if all goes according to plan… we are supposed to be leaving Monday or Tuesday at the very latest to go to Cleveland. We have appointments scheduled at 2 PM on Tuesday and therefore, we have to be at the hospital by 1PM. Therefore, it is really best if we leave Monday, but that also means that it is a day sooner and we don’t know if we can afford it or that we will be able to arrange it since every day technically counts since it is so soon and we need to make so many arrangements. I don’t even know how we are going to make all these arrangements by Tuesday especially since we know how expensive hotel and plane arrangements are when you do it last minute. We are even hoping that they have openings because of how last minute it is.
So we are meeting with the team Tuesday and Wednesday. I will be having various final testing, meeting with interventional radiology because they will be putting in the central lines and will need to be on hand for various other procedures, meeting with anesthesiology, and meeting with the team, which includes my doctors and surgeons. I will then hopefully be able to go home first thing Thursday morning. I need to get home because I have my usual surgery scheduled for Friday at Mount Sinai. I will then finally return on Sunday, August 24th, which will be when I will be admitted for the huge surgery. I will then have to be hospitalized after the surgery for 1-2 weeks and then I will have to remain in Cleveland for about 1 week afterwards to make sure that I am well enough to go home. Of course this is if all goes according to plan. However, if they find out that the toxins are coming a lot from other organs, I will have to undergo the transplant as soon as possible, and I don’t know if I will be kept there or allowed to go home and they will wait a bit. They won’t know until they see how I do with the colon out.
I have to go for my weekly surgery at Mount Sinai because I not only need to have my intestines cleaned out because of the toxins, but I am also scheduled for an EGD. If I don’t go for it on Friday, it would mean that I would have to have it done in Cleveland as well, which would mean staying another day. So the doctors have allowed me to do it at home so that I don’t have to stay another day.
It is going to be a long two weeks. But hopefully everything will be ok. In the meantime, I have my mom’s birthday today. I am going to try to be as happy as I can be under the circumstances. I bought her a cake and I am going to try to make it as special as I can. I would love to be able to take her out to a restaurant for dinner or buy her something really special, but unfortunately I don’t have the funds to do that. I also can’t really eat at a restaurant and that really makes going out to dinner to celebrate her special day an impossibility. I feel so bad because she hasn’t gone out for dinner in the longest time. It would be great to go out to a restaurant to eat especially to celebrate such a wonderful day. But hopefully I will get well soon and when I come back from the Cleveland Clinic I will be able to go out all I want to dinner because I will be able to eat again. Hopefully this is the start of my miracle.
So… this is the latest news. I am extremely nervous… I am not going to lie, but I know that this has to be done because otherwise I am going to die. They always say that time changes things, but in actuality… you have to change them yourself!! That is why I need to get to the Cleveland Clinic and help myself ASAP. Life is like an ocean. You got to keep swimming.
Life is like a swimming pool. You dive into the water, but you can’t see how deep it is. But I know that you just have to keep swimming no matter what and as long as you do that… everything will be ok. However, unfortunately, me staying afloat and able to swim is all contingent on receiving help from others.
Like I said before, all this is contingent on the availability of funds. Please help me. Please pray for me. Please help me raise as much funds as possible because I desperately need this surgery as soon as possible. Please spread my link at www.gofundme.com/FallonMirsky
and help me raise as much money as possible so that I can get to the Cleveland Clinic to have this operation.
Thanks again for all your encouragement and support.
August 5, 2014
Well… here I am at the Cleveland Clinic and I have news to share. In fact, I am so glad and fortunate that we came here because this hospital and doctor are so amazing. I really think that after crisscrossing the country and being poked and prodded like a guinea pig, I finally landed in a hospital and doctor that is going to save my life! I really think this doctor is not only knowledgeable in his field, but he is not going to be like so many other doctors that have promised me so many things and then got scared and backed out. I just hope that I get the treatment that I need in enough time because I am really running out of time!
Well… we finally made it to Cleveland. This place is huge and there is other stuff to do on campus other than just go for medical treatment at the hospital. So yesterday we went to the Museum of Natural History to kill some time. Well… it definitely wasn’t like the one in New York. In fact, it was so small and childish that we really did wonder why we went there. The biggest attraction that we saw was some live animals, which included a deer, some owls, and a turkey. But, at least it did kill the time.
The campus of the Cleveland Clinic is amazing. We keep seeing transplant helicopters, which makes me hopeful that I will get better here.
What a day I had today though. My head is still spinning after all that has happened. I found out so much news… news that I never knew. I mean… I knew that I was sick, but I never understood how sick. I also never quite understood what was happening to me when I was feeling “tired” all the time or when my brain was feeling “foggy” at times either. I always blamed it on lack of sleep or my medications, but apparently it goes far beyond that.
The team in Cleveland Clinic is simply amazing. The doctor came into the room and the first thing he did was give me a hug. He sat right next to me on the table and gave me the nicest hug you can imagine. Never before did a doctor do that to me before. It really made me feel good and it made me feel like there was a doctor who cared.
The doctor then asked me a few questions, as if he knew how “good” he was and how he wanted to show me how I am in such great hands. He asked me “Do you know who I am?” Of course I knew who he was. I only researched him thoroughly and knew everything about him from his picture to his curriculum vitae. He then asked me, “How did you find me?” He also finally told me that I am in “good” hands and he is not going to give up on me.
I never met such a caring and knowledgeable doctor. It turns out that I need surgery as soon as possible because I am so very sick. However, this doctor isn’t going to stall us out or chicken out like the others. He said this has to be done now.
I also learned why I am sleeping more than ever and why my brain is so foggy and such. It turns out that since my GI track is gone… especially my colon, all the toxins are building up and pouring into my bloodstream. Therefore, I am becoming totally intoxicated and poisoned. It is poisoning all my organs including my brain. This is leading to cirrhosis of the liver and it is also poisoning my brain. If something isn’t done fast, it will continue to intoxicate my body and I will end up in a coma and die.
At least now I know what is happening. I knew something wasn't right. Some of the doctors kept saying that it was my medications that were making me so "sleepy" and "cloudy." But I knew that couldn't have been the answer because I have been on these meds for a very long time and if so, why all of a sudden is all this occurring? I knew that it had to be something else. It is getting harder and harder to stay awake and as I am continuing to be intoxicated by the toxins, it is only going to get worse. That is why it is imperative and urgent to get this taken care of right away because if it isn't, I will end up going into a coma and dying. My whole entire body is being poisoned.
So the question is whether I should have a transplant or just remove my colon. The doctor said to my dad, “If she was my daughter, I would transplant her immediately.” However, he didn’t want to do that because he said he didn’t know the “enemy,” which is the neurological disease known as the RSD. He isn’t too familiar about it and since I am documented as the worst case that exists with it, he didn’t want to do a major transplant until he knew all that he could about the RSD and how it would react to the transplant. So he is doing all the research that he can and also sending out all these other doctors and staff to do research on my illness as well. He is even calling out doctors from retirement to see if they can help. The doctors said that Dr. Kareem, which is my head doctor, is like a terrier. Once he sinks his teeth into something, he don’t let go until he finds out all he needs to know about something. That really made me feel good when I heard that because I knew that he wouldn’t give up on me.
In the meantime, something has to be done because my whole entire body is becoming intoxicated and I am going to die. Therefore, he is going to take out my colon as soon as possible. I told him that I really didn’t want a “bag” and he said that he is not a “bag guy!” I didn’t quite get the joke, but my dad did and they laughed at my expense. But then when I caught on, I figured it out.
The doctor told me that he isn’t looking to giving me a “bag” when I go for the surgery. However, nothing is a guarantee. But he did say that he is 99% sure that I won’t need a bag and if it should happen, then it would only be temporary. That made me feel so much better because I definitely didn’t want one. At least I also know that if it did come down to it and I had no other choice, at least it will only be temporary.
So the plan is all set for me to have my colon taken out in the meantime. However, there are some tests that need to be performed before they can do the surgery. Therefore, I will be coming back a few days before surgery so that I can have these tests done and then I will go right into the surgery. I need tests such as a heart stress test and others.
The surgery has to be done as soon as possible because of how bad I am doing and how quickly the toxins are spreading and I am deteriorating. The surgery will be about 10 hours long. He said that I would have to stay here at least 2 weeks. I don’t know how we are going to manage paying for all this especially when dad won’t be able to work during this time. So… if you can please help me raise some funds… It would be much appreciated.
I also met with the TPN doctor named Dr. Steiger. He is supposed to be the “founding father of TPN.” He is also going to be working on the team to see if he can try to get some TPN into me so that I can gain some weight and it will help me heal and everything. I have had TPN before, but unfortunately, I failed it all those times.
So… that appears all that is happening. My head is so overwhelmed with what is happening. I can’t believe that I am being poisoned. I can’t believe that there are toxins being built up and that it is going to my organs and even my brain. At least there is not an answer why I am so sleepy all the time and why I am having trouble thinking and concentrating.
I really feel like this is the place that is going to get me better. The Cleveland Clinic is such an amazing place to be. We kept seeing the transplant hospitals come to the hospital and I really felt hopeful that one day that helicopter will have my transplant organs on them. Since 2003, Cleveland Clinic has been ranked #2 in Digestive Diseases. The doctor that I am seeing, Dr. Kareem, is absolutely the best, as he has done the most GI transplants than any other doctor in the world. So fingers are crossed that this is the beginning of my journey of getting well. This is the beginning to my MIRACLE!!
My dad is really too funny! It just so happened that there were workers on top of the main hospital at the Cleveland Clinic working and my dad wanted to see exactly what they were doing. The building was extremely high and my dad was being inquisitive and nosy. We were in the doctor’s pavilion, which was located directly across from the main hospital, but there was quite a distance of more than the length of a football field between the two. Therefore, he took my camera and zoomed in on them to see what they were doing. He is really too funny.
I felt just like a little kid again with my dad pushing me in the wheelchair. After going to the doctor, I wanted to go to the Gift Shop to see if I could get a sweatshirt that said Cleveland Clinic. However, I was too weak and tired to walk and therefore, I really needed a wheelchair in order to make it there. I felt just like a little kid with my dad pushing me because when I was little, my dad used to push me in a wheelchair every time we went to visit my great-grandma. We used to run up and down the corridors with him pushing me in the wheelchair and I loved it. I almost wanted him to do it again in the hospital to bring back old times.
So… we are on our way home tomorrow to get things organized for our return trip here. We don’t want to waste money here while things get organized for the big surgery. We figured that we would go home and when things get set up and situated, we would then return back. This way everything would be in place and we would only have to spend when needed. The doctors are hoping to have us bad by the end of the month because of how badly I am doing, but of course it is contingent on the hospital schedule, which is always so busy because this is like the top hospital in the country, as well as on the funds that we have because if we don’t have money… then there is no way that we can come back and have this surgery of course.
We were really worried about the water when we came here because Ohio was in a state of emergency and was told not to drink the water. However, we found out that it was safe to drink the water here because where the hospital is located, the water is running too fast to actually carry the toxins that is poisoning the water that the other parts of Ohio cannot drink.
Well… I guess that is it. I guess I shared all the info that happened. I guess I just have to start preparing for the huge operation. Please continue to pray for me! Please continue to spread the word that funds are desperately needed because without them, I don’t know how we are going to afford this operation. Thanks so much for all your support!
August 2, 2014
Just wanted to write tonight because there is stuff to be known and tomorrow we are hopefully off to the Cleveland Clinic in Ohio. Yup… dad and I are off on another adventure!! So I just wanted to write and let you know all that is happening, as well as let you know about the upcoming trip!
To begin with, I want to announce that unfortunately the walk that was scheduled to bring awareness for my illness and to hopefully bring the much-needed funds for the lifesaving treatment that I need has been cancelled for this weekend and has been rescheduled. Due to the weather and an offer to have it “recorded” and made into a full-length (90 min) documentary, we thought it was best to have it postponed for about 2 weeks. I am so fortunately for this lovely lady to be willing to do this WALK for me across Fire Island. She is definitely an angel.
The walk across Fire Island will be about 35 miles long and will take over 2 days. The lovely lady willing to do this walk is a lady who I never met, but we have a lot in common. She is finding it in her heart to do this walk and trying everything in her powers to help to bring me the much-needed funds that I need in order to receive the lifesaving treatment that I desperately need. She has even started a group page on Facebook that you can join and follow known as FEET FOR FALLON 2014. Please go to it and “like” it and follow it so that you can know all that is happening.
Besides the walk that was supposed to take place this weekend, I am leaving for Cleveland Clinic on Sunday. Unfortunately though we don’t have the funds that we need to stay the amount of time that we really need to stay. The doctor really wanted to admit me as well when I see him on Monday, but unfortunately we are short on funds and therefore, it is really impossible to stay there an extended amount of time this time.
When we go to Cleveland this time, we are going to be meeting a ton of people. We are going to Cleveland Clinic because the transplant team wants to see me because I am soooo very sick. In fact, I have such severe gastroparesis and so very sick that they are thinking about giving me a multivisceral transplant. Originally, all that the surgeons wanted to really do was take out my colon even though my entire GI system was affected. Yet, the transplant team feels I am too sick and just taking out the colon will not be enough. They feel that it will go far beyond that and will include transplanting the colon, small intestine, stomach, pancreas, and liver. It is a massive transplant that is supposed to be extremely dangerous. In fact, it is the most dangerous transplant you can have. Any transplant that deals with the intestines is considered the most dangerous because it deals with the circulatory system and all different veins and such instead of nerves and such. Only 6 hospitals in the country really do this surgery because of how rare and risky it really is.
It is such a rare and risky surgery that only very few surgeons do it. Fortunately, I am scheduled to see Dr. Kareem Abu (I call him Dr. Kareem and so does everyone else because no one can pronounce his last name) and he is supposed to be the best surgeon out there. He has done the most transplants ever and there is supposed to not be a complication that he hasn’t seen. Well… I wonder what he will think of me because I am such a complicated condition. After all… I tend to stomp all physicians because there is really no physician that has seen anything that is happening with me. After all, I usually have doctors running all over the hospital with their feet not even touching the ground because they are scared and don’t know what to do because they see things with me that they never have seen before. So I am only hoping that this doc will really be able to help me.
However, I am still crossing my fingers that I will be able to see Dr. Kareem even though we are scheduled to see him first thing Monday morning. The reason I say this is because since he is the best surgeon and the head honcho there, I was told that if an organ becomes available while I am there, he will have to miss my appointment and go to the operating room instead to do the transplant. I can’t blame him because I would definitely want the same respect if the shoe were on the other foot. You can’t control when a transplant comes available and if a transplant does become available, you always want the best of the best doing the transplant. So hopefully I am not going to be making this trip all for nothing.
Not only will we be seeing Dr. Kareem, we will be seeing other doctors as well. We are also scheduled to see another doctor who is supposed to be the “father” of TPN. I have had TPN in the past and unfortunately, it has failed me multiple times. Yet, I only weigh in the 60s and my BMI is like 10.8, which is extremely dangerous. I desperately need to gain weight and losing even an ounce is extremely crucial. With the weight that I am, it makes any surgery (especially a transplant) extremely dangerous. Therefore, they want to try to make gain some weight. I can’t eat or anything by mouth because my entire GI system is gone. It is completely paralyzed. All my organs from my stomach to intestines are basically ‘dead’! Even my esophagus doesn’t work. I can’t even swallow anything thicker than water and even with water, I basically have no ‘swallowing.’
I barely can tolerate eating or drinking anything as it is. I am so limited to what I can eat and drink. I only really can eat egg whites and ice cream … and even that is extremely difficult. I also have to be careful with eating and even taking my 50 pills daily because they keep getting stuck in my esophagus because my esophagus doesn’t work. There are so many times that the doctors literally have to go into my esophagus and remove it because it is stuck. My esophagus is so bad that one shrimp or something takes up my entire esophagus.
I can’t even drink anything because I keep bloating up. If I want to drink anything, it has to be made into a slushy. I can definitely forget about drinking water because that is the absolute worst. I have learned though how to make soda slushies in like 3 hours. It stinks though because if I forget to put a drink in the freezer, I have nothing to drink because I have to then wait for it to “freeze” and become a slushy. I have to be so careful of what I drink nothing quenches my thirst no matter how thirsty I am. Then I have to worry about how much I drink because the slightest amount that is considered “too much” for my body (i.e. a cup that my body considers too much) will trigger off my autonomic dysfunction and really bloat me. I also have to be careful because every time I drink, it is also spilling into my lungs and making me ‘drown’ in my own fluids. I am aspirating like crazy as it is, and when I drink… it is making it even worse.