Mekayla's transplant/medical fund
I was referred by my doctor to GI and FAP specialists at Moffitt Cancer Center in Tampa,Fl and told that I needed surgery and that it would be complicated.After the surgery, I was told that with the disease comes a 100% chance of Colon Cancer as well as other ones.My body forms tumors,desmoid and slow growing ones, in my whole body.If that's not devastating news,there's also no cure known.My mum passed away from Colon Cancer at age 50 when I was 18.Finding out about my illness and that it's an inherited gene mutation,we found out that my mum had the disease as well.I'm the first generation to be diagnosed with it,after my brother,Aunt,cousin and my gramps were tested in England,they all tested negative,thank god.My kids still need testing done which through the insurance they would not cover their genetic testing,the easiest and fastest way to diagnose FAP.My Dr. at Moffitt told me when I asked him,that they haven't done blood testing to see which gene DNA it is,which I don't understand seeing that I have two amazingly beautiful children who need that information to make it cheaper and easiest to find out for them.Genetic testing is pretty expensive sadly.
A little over two years after my first surgery,I developed a serious bowel obstruction,unable to eat or drink,coming up through my nose,vomiting
Nonstop,excruciating stomach pain,which when I got to Moffitt and was admitted,I had to wait with a ng tube,that kept coming out,only to be shoved back in and down my throat,to my stomach.not a pleasurable thing of feeling to happen.after about 5 days my Dr. came back from his vacation and finally saw me,and was told that this was a catastrophic obstruction which would again require a lengthy serious surgery which they would need to take out my large intestine,my colon and most of my small bowel,half of my six pack muscles,use mesh to rebuild that along with a mouthful of other things that I forgot since I was stuck on removing my colon,the word cancer,and having an ostomy for the rest of my life,at age28.I woke up after a long surgery in the ICU,where I was in the hospital again,as the first for 30 days.
I tried and did stay positive,especially in front of my boys,who only had their mum by phone or 2x weekly visits, since we lived 45 mins away,school and trying to keep their lives as normal as we could with sports,there just sadly wasn't enough hours in a day,which helped.
between these surgeries I had gone through endless tests,procedures,complications, you name it. I've had so much done to me that it is easy to forget it all.the surgery to remove the tumor left a cut into my fermal nerve which gave me horrible nerve pain from my hip all the way down,above my knee. countless surgeries,nerve blocks,numbing or killing the nerve,lots of medications that left me sleepy and unable to get out of bed to care for my kids,do housework etc.it was horrible.
as bad luck would have it, I was getting over a cold,nothing serious,and found huge blue and purple bruises on my back.it had looked like I fell down a few flights of stairs,I rushed to the er and after tests,bloodwork and 3 lumbar punctures,I was told that I had AML~Acute Myeloid Leukemia,and had only four,yes FOUR platelets! the normal range of platelets is over 100,000.I stayed 8 months in the ICU,having 2 weeks of intensive chemotherapy,antibiotics,2-4 times daily platelet and blood transfusions,pneumonia,infections,losing my hair,missing out on my boys day to day things,making memories together,football and baseball practices and games,finally was well enough to go to the oncology floor,to this day I'm thankful to the ICU nurses some who have become friends that took care of me when I was so sick and made each day a little brighter at such a scary
four years ago I was admitted to the hospital and my doctors had to go back into my abdomen and remove tumors,which with my past ones,left me with loads of scar tissue with the mesh it was a risky surgery that nobody wanted or thought they could do,I was grateful that my Dr. that I have now, was willing to perform it, telling me that there was a chance my quality of life would change drastically afterwards or that I wouldn't wake up afterwards. I was devastated and had a friend bring me two journals one for each of my boys that I could write everything I wanted them to know about me and all I wanted for them in their lives.that surgery was the hardest and longest and said it was my last,with how badly mangled and scarred up I was inside,along with three tumors which they could not remove,but I came through and beat the odds I had against me.
these past two years I began losing weight,which at my lowest left me at only 93 pounds.blood, bone, CT scan, and tests, were done but all came back normal and ok .I was told it was from stress.A few months later, I started having more pain than usual in my stomach and a fever of 103.7,went to the er was admitted and told that they had to perform surgery since I became septic ,due to an infection in my stomach,placing a tube/drainage bag having to rush me back into a second surgery and placing me on a ventilator. later, I was told that I had a catastrophic sized fistula in my small bowel,a tear in my small intestine,leaking into my abdomen and that Moffitt,my doctors,called to have me transferred.while waiting to go,the doctors at Morton plant told me there was nothing left to do with my condition and that I was dying.At Moffitt they found that my stents in my kidneys had caused my right side urethra to disintegrate if they were exchanged them and that I had a hole in my right kidney,having to have a nephrostomy placed on my 40th birthday,spent in the hospital,and connecting my kidney to my bladder or most likely to loose my kidney,which is what I'm told is reality.I'm waiting now,since may 13th,day of my-my prior 2 unneeded surgeries done at Morton plant,by unknowledgeable of my case and to fap/Gardner's syndrome,for my stomach and surgery to heal and settle down,not being able to eat or drink and being on TPN through my pic line which supplies all my daily needed nutrition which is extremely hard on my liver since there's a high sugar level and needs weekly bloodwork to check my overall body but mostly my liver to make sure its not getting damage. I'm needing desperately to get a small bowel transplant in Miami,at the transplant center at the university. I need to go there Monday the3rd of October to have tested and talk to the transplant team to see if I will qualify to receive the transplant.if I am unable to get this surgery,i will have to have my surgeon who did my last one fix the fistula,which will leave me with short gut syndrome and having to be on the TPN for the rest of my life,issues with my liver,and chance of dying from liver failure being the end of my life which I have been told,having new small intestines will give me a new lease on life,I've been living with these tubes and having such pain,my stomach tube continuous leaks as bad sometimes as gushing out like a fountain out of my stomach,causing me to have to change the dressings as much as 20 mins apart.I stay positive and upbeat,I can laugh about it and I know that I'm strong,i have a amazing man, who takes care of me and stands by my side when most would run or disconnect emotionally eventually physically, as well as two of the most greatest and loving children a mother could ever have,they're the best things that I've done with my life and I fight for them,period.but there're days when I am so tired and begging for it to be fixed and although I put on a brave face or a sweet smile,I'm scared to death deep down within me and don't want to lose this battle when I've overcome so many setbacks,cancers,infections up until now. The risk of this happening again is high and with a new small bowel, that risk will drop. I am in need of financial help with the cost of traveling back and forth to Miami which is 4.5 hours away, Also, the hotel costs for myself as well as family when they are there, Not to mention, the constantly required trips for antirejection medicine The transplant team handles this only in Miami. The cost of these procedures is extremely expensive. I simply can't afford this. Money is extremely tight. I am disabled and unable to work and receive less than the cost of one of these procedures every month. I only get social security which is barely enough to cover my bills, Dr visits and take care of my kids. I am very grateful for taking the time to read this. Please find the kindness in your heart and donate anything you can. The price of a Starbucks coffee can provide me a second chance at life, watching my children graduate, start a family, and provide me the grandchildren I have always dreamt of having. Thanks again for your kindness and generosity.
Love from Florida,
As a result, I was informed that my Gallbladder and kidney's were causing me to get sick. My Potassium levels were getting critically high. I was told that my Gallbladder needed to be removed, so I had the surgery to remove it. This caused me to suffer agonizing bouts of nausea, and I was severely dehydrated constantly. So, then the Surgeon in Miami told me they needed me to come down for a cat scan and other tests. We explained that we lived five hours away, and we would need a place to stay. The hospital told us unfortunately," that we would be responsible to find a place to stay.This was very expensive as we had to find housing, and make sure the car was tuned up and ready to go.
Then, a few days later, at 4:30 in the morning, we got the call that they had found a donor with the organs I need. I can't even begin to explain the emotions that were racing through my head.Tears began to fill my eyes, thinking " thank you god"! I had to pinch myself to make sure this was not a dream. It's hard to explain what it is like to be woken up to hear that they had life saving organs waiting for me. The transplant coordinator said, " you need to get to Miami in 4 hours" Needless to say, the race to find a flight and how we were going to get there was causing a lot of panic, and anxiety. We had an hour to get to the airport check in and get to Miami,Through the generosity of your donations we were able to book a last minute flight. The cost of a last minute flight was very expensive and the costs started to add up quickly.
Well, we made it to the hospital. Once we got there, we received the news from Dr Beduschi that he saw the organs, and felt that they were not in a good match for me.That news really hit me hard, but I know that the organs will come and that Dr.B knows how urgently I need the transplant, He told me that we have come so far and the call with the perfect organs will come. Be patient, stay positive,keep fighting. I have faith that when I get that call again, Dr.Bedushi and Dr.Vianna will save my life.He's going to admit me while I'm here. He did say that my Kidney needed to be removed and my fistulas fixed in order to be well enough for the transplant.
This means another major surgery, another missed Birthday for my son Logan, and another holiday spent in the hospital. I really need everyone's support, prayers and healing vibes now more than ever. Please donate what you can, or if you have a place near the Miami area where we can stay, or share this with people that can get the word out to the masses, all helps every little bit means a lot. I am trying to stay strong and positive. Although, the organs were not a perfect match, I still am scared about this major surgery I need in order to be ready.
In addition to the news of the transplant not being able to happen now, the patient care technician that cleans the room makes the bed,etc.. made my bed while I was using the bathroom. When I returned from the bathroom, I asked her about my cell phone that was on the bed. In a very rude and unapologetic tone said, " sorry it must of got rolled up with the bed linen and thrown down the linen chute!Were not aloud to shake the sheets or blankets."Never heard a "I'm so sorry!!" from her once!Now thank god that I have insurance because the hospital is unable to find it so I'll need to file a claim with my carrier and purchase a new phone,not planned plus,its not fun and so hard to be 5 hrs away without a phone to get in touch with family and friends.I will hopefully have the surgery by or on Monday and Tasso and I will keep everyone up to speed on whats going on.Thank you everyone for all your love,support,well wishes and donations helping me throughout this long journey!!!I love you guys!Please take a moment and just hit share to share this on your FB,linked in twitter emails etc. to get this around to everyone!Thank you so much!!! xxxx