I just wanted to let everyone know I am doing well. It has been 5 months since surgery and I have made amazing progress. I still have recovery that I am going through. Still sore and my chest has healed up nicely other than the yucky boney bumps that have fused underneath my tissue. I can expect a year for complete recovery. I am sleeping much better now that I am in physical therapy. They are working to help me with shoulder and neck pain caused from my devibrillator implant. I also have some ribs slightly out of place since surgery around the collar bone area. I would say around the end of December is when I felt my energy level improving. I painted my living room. It wasn't easy for me, but I did it. Sometimes I am an over doer so I have to make myself rest. I am adjusting to the reality that I can never play singles tennis again or any other start/stop sports. I am becoming okay with this and I am glad that I can continue hiking and living my life otherwise. I am so humbled by the help I recieved from everyone and I cant begin to thank you enough. You will never know how much it truly means to me. I am able to continue to watch my children grow, enjoy life, be with my loved ones, enjoy my animals, and draw closer to God. I am blessed. I still want to continue my journey helping others. Right now I am in working fulltime and trying to finalize my medical bills post surgery. I was able to get some help with the hospital; however I have cardiac tests, radiology, labs, defibrillator checks, and doctor visits I am responsible for. It is overwhelming, but I am getting there. I am just grateful! I love you all!
Hey everyone, I just wanted to say thank you for your support and all of your prayers. My surgery went very well. They removed 8 grams off of my heart and repaired my mitral valve that had been severely leaking. I am 6 weeks into my recovery and I am doing well. It isn't easy to recover from open heart. I am up to walking a half hour and I am doing light chores around the house. I feel pretty good, but I do not have my energy back yet. I am told this will take time along with my ribs, sternum, and cartilage to heal. I am still about a month and a half from returning to work. I managed to get by with the funds this month and still have a bit left to apply for next months bills. I am still grateful for any funds that come in as they will be used for keeping a roof over my head until I return to work. Otherwise I will possibly be returning earlier than I am supposed to. I haven't even had my follow up post surgery, so I have not been cleared to go back to work. Even when I do go back it will be a gradual to full time. I thank you all and I am forever grateful!
Thank you to all who have helped. We are still trying to continue to raise more for Jessica's Heart as the expenses are enormous. We Did great on the hotel rewards points and got 2/3 of our hotel stay in Stanford covered. We are still around 800.00 short . We still need to raise money for expenses while there and while she is unable to work. Please feel free to continue to donate and/or pass this on. Www.gofundme.com/Jessica-szoyka or the link on this post, for those who are not local or prefer the online method, and locally donations can be made at Evergreen Federal Banks. Medford branch or Grants Pass Branch. Just ask to have it put in the Jessica Szoyka medical account. Thank you.
Please help save a life!! Jessica is having two surgeries over the next month and funds are desperately needed to help get them done! Please donate or share and encourage others to donate. With out the pace maker she could have a fatal arrythmia and die instantly! Her two week ecg showed she was having bad arrythmias daily. On the other hand the obstruction is making even breathing difficult. Please please help!
Something weird happens to me today. I spoke to a woman that recently became widowed by her 29 year old husband. He dropped dead at work. They were unable to revive him. He left behind 3 children. I normally do not ask "why" someone died, but felt that it was unusual for a 29 year old to suddenly die who was healthy. She said the autopsy showed hypertrophic cardiomyopathy. She said her husband bicycled a marathon beautifully the day before. No symptoms. She was really lost and confused on how this happend. It saddened me that another young person died from this. I gave his wife the information on the patient advocacy behind HCM. This widow will now get all of the answers she needs and she will be taught how to protect her children from this. I really believe there was a reason we connected today. I don't care if people say things do not happen for a reason. Maybe they don't, but I believe God is a reason behind all things. Sometimes I don't feel my symptoms and question if I am really sick? Sometimes I want to excercise because it doesn't seem real that this is my condition. This truly makes me realize that this is why I cannot excercise. That marathon killed him. Even if it wasn't instant, it was the next day. His heart went into a dangerous rhythm. People who have our heart disease do not look sick and we often get over looked because we are young and healthy. If you are an athletic person or have athletic kids, get them checked. Most people have no symptoms. I didn't either until a few years ago and even then I ignored them. 1/500 people! This disease can rip right through families killing multiple people young and old. Be safe rather than sorry. Go to www.4hcm.org for more info about this disease.
It's been awhile since I posted on here. There has been so much going on and I apologize that I haven't been on top of things. I met with my surgeon Dr. Ha on Monday and the good news is that I can wait until August to have my open heart surgery. He explained that he will go through my aorta to get behind it, which is where the thickened part of my heart muscle is that needs cut. He said my heart muscle is really thick and it is causing my blood to spray, because of the pressure from the obstruction. Kind of like squeezing the end of a garden hose. The bad news is that I cannot have my cardiac defibrillator implanted at the same time that I have open heart, because it is too hard on my body. I will need to have that done either before or after open heart; however, he will need to consult with my cardiologist to review my MRI to determine if it is even safe for me to get the implant before surgery, because I am severely obstructed, which may not be safe to put me to sleep before open heart. The other problem is, if I wait until open heart it could be a risk of them interrupting my conducting system which runs the electrical system to my heart. When they cut my tissue, they run a pretty high risk of cutting into the electrical area, which could complicate my surgery. If I am already having dangerous rhythms, they do not want to risk that either, which could create a deadly rhythm post open heart. Either way it is risky. I also may need a new valve, but he won't know until he is in there. If I do, it will be a bionic valve which will require me to be on Coumadin for the rest of my life and limit my activities, such as skiing or anything that could cause me to bleed if I ever got hurt. He told me that I shouldn't wait any longer. I am already severely obstructed and if I wait, my heart will begin to fail. It will become more damaged and then I will have other problems with the rest of my organs. Then the heart cannot be corrected and will need a transplant. My struggle right now is that I have no money to pay to stay around Stanford for 2-3 weeks post op. Dr. Ha said that I will be severely uncomfortable when I wake up from surgery. I will wake up with a giant Charlie horse in my chest and a breathing tube down my throat. I will be hating life that first week. He said it is really rough. I will be in ICU the first 3 days and moved to recovery room for a week. If no complications, then I will be discharged and I must remain around the hospital for 2-3 weeks post surgery. There isn't much in the way of financial assistance for housing for out of state patients. I will be on a list, but there is no guarantee that I will be granted housing leaving the hospital. I can't take a chance on no guarantee. Even if I was eligible, they said I had to have a backup plan and I don't. We cannot afford hotels for 3 weeks. I want to be comfortable as well. My kids will be going home with Kevin and my dad, because they have to go back to work. My mom will remain with me to care for me and be with me. We have already spent over $1000 to be down there these last two times. Bottom line is I need at least $5000 by August. That's almost around the corner. The money I have already raised is very minimal, but paid for gas, food, and a couple bills while I had lost income from work. I am now down to 3 days per week working, even that has become a struggle. My condition continues to get worse. I go to bed and my heart pounds so hard I cannot breath. I am more dizzy, my stomach isn't digesting food very well, my pulse is so strong that I feel like my heart is in my stomach. My upper back hurts from chest pain. Chest pain is becoming a more common symptom and I can feel my heart skipping around time to time. My medicine or lack of blood flow is effecting my thought process. Stress doesn't help that either, but my mind feels slow. The fatigue is getting worse too. Swelling is getting worse too. I know I am blabbing and blabbing away, but I feel really lost right now. I have no energy to fund raise and I am asking for help. This is what I need: 1)I need someone to advocate my fundraising that has more energy than me. I need someone to be aggressive in helping me raise money 2) I need donations, such as money, items for yard sale, even gift cards for gas cards, grocery stores, etc. 3) I know alot of people are in tough spots, kind words help too, since I am full of worries. 4)If anyone has a house/apt to donate for 2-3 weeks in the Bay Area near palo alto/Stanford area. That would cut my expenses and be a relief . Thank you to everyone who is following me. I know that when this is all over, I am going to start a foundation for cardiac patients needing housing out of state or so they don't have to separate from their families. This foundation will be warm, welcoming, caring, and overall will help relieve families from stress. I shouldn't have to be going through this. How do you follow your cardiologists orders to eliminate stress to keep symptoms at bay, when you are so strained with worry? If you all can help me, I promise this will be a chain reaction. I will most definitely eliminate this from happening to someone else. If this happend to me a few years ago, I wouldn't be in this situation. I would of sold my home, borrowed against it, or taken from my 401k. As you all know the economy and housing market crashed and I was a part of that loss. I lost what I had. I was starting over and then I got sick. Stuff happens. Help me so I can help others!
Thus is Kevin, Jessicas fiancé. so the final test came back today...Jessica wore a portable Ecg for two weeks to check her heart rhythms and make the final determination for whether or not she has to have a difibrilator implanted at the time of her open heart surgery. We were pretty sure it was happening but now we are positive and it is definitely having to have it implanted. She had several recorded events on the portable Ecg that if untreated, and any longer in duration, can kill her. These arrhythmia, or irregular heart beats cause sudden death. Very scary. Please pray for her and send support in if you can, surgery is drawing close quick..
Wish I knew what happend. I was up at 7 and getting my day started, ate a tuna sandwich at 11 and got so tired I felt terrible. My heart was pounding so hard and I slept for 4 hours. Just woke up and my arms and legs feel tired. So much for everything I needed to do today. This is not me, I am never tired like this. Feel I am getting worse.
So, I leave June 16th to meet with the surgeons. I will be staying around the Stanford area for a couple days. At this appointment, my surgery will be scheduled. I will have to travel back down for my surgery along with my family. I am so worried how we are going to take care of travel expenses. I am not worried about Blue Cross not paying. They will pay August 1st once my per existing waiting period is up. Besides, I can also apply for financial assistance. I am reaching out for help for travel expenses, such as gas, motel, and food. The cheapest hotel with Stanford patient rates was $146/night; however, the longer the stay, the cheaper the rates are. Staying between 6-29 days, the rate is $120/night. I am just not sure what to do. People tell me not to worry, but how can I not. I can't even face my own fears with this, because I have to worry about money. I cannot afford to travel or pay for 2 weeks in a hotel. That's $2000! I have received $600 in donations and I am grateful, but I am asking for additional donations. You can donate any amount on here. I am down to working 3 times per week due to my symptoms. Money is so tight right now. We went to the media, but that doesn't seem to be doing much. I think that's because it sounds as if our main concern is insurance not paying. That isn't my worry, it is travel expenses. This is our main focus! Please continue to share this. Kevin will be doing more things to raise money, such as car wash, garage sale, and getting in touch with local businesses. We have to set our pride aside and ask for help. I never asked to be in this situation and I just want to get better. I am tired, worried, and depressed. I am hanging on for hope and I know somehow, I will get through this. If you have any fundraising ideas, please share with us.
My phone is cutting my messages off. Anyways, I have hypertrophic obstructed cardiomyopathy with myocardial dissaray. This means my blood and oxygen is being obstructed due to a thickening in my septal wall. I also have abnormal cells ewhich can cause electrical problems in my heart.
Feeling defeated today. My heart has been poundingg and driving me insane. It hurts to breath and it hurts my bones. I have had a constant feeling like someone hit me in my sternum. It is making me want to throw up. I am also feeling as if somebody is squeezing my neck. I feel too exhausted to stand, do my hair, or anything else today. Sad that I feel like I havent had much energy to even be much of a mom. I just dont have much strength. Some days I feel good, but I have noticed over time my good days are lessened. This reminds me that I am progressing into being more symptomatic. I just wish I didnt feel this way. I just worry that my quality of life will be worse. Honestly, this is bad enough for me. I look at my laundry, dishes, kids, yard and remember that my desires used to be there everyday. I am overwelmed now just tjinkinking about it. Luckily, Kevin is taken care of it, bit he is on his own and I feel guilty being in this situation. We made a chart for the kids to be on board. I am tired and I feel totally screwed financially. I am not sure how we are going to get through this, but we will. I made my mind up yesterday that I am going to begin an organization to help young families that are effected by serious heart disease. I am gping to help fund their bills when they cant work, have people come in and help with day too day activities that they are unable to do. My gpal is to relieve stress. If you can help me, I can help others. If you would like to learn about my heart condition, look up www.4HCM.org. You can read about the different types. I have hypertrophic cardiomyopathy
Omg, my post was cut off! I will recover 3 weeks total and come home and recover for a few months. I will also be in a cardiac rehab once my sternum and bones heal. I am asking for donations even as little as $5.00. Every bit helps and I have quite a bit of saving to do in order to get my surgery lined up. I cannot do this alone, so I am asking for all of your help. If you just cant, I understand, but please share this!
Hey everyone, I know it has been awhile since I have posted, technology hasnt been available for me. I learned so much from Stanford! Learned alot about my condition and about my family. My heart is definately obstructed pretty good and my symptoms were validated. I also learned tjat this is why stomach is hurting. When you eat, blood flow increases in the abdomen im order to digest food. With my heart not pumping enough blood, causes problems in my stomach. I am eating smaller amounts of food to help. I am told not to eat much salt,, which I dont anyway. I am to avoid the hot wrather, roller coasters, and to not over drink water. Staying at 50 0z. I have failed meds and I am trying the last series before surgery. They started me on Norpace, Metropolol, and lasix. I am pleased to know that my weight gain from water retention wasnt all in my head. My symptoms are real. The only way to fix this is to have open heart surgery to better my quality of life. The Dr wasnt confident that these meds will help me, since I failed everything else. He said 8% of people in my situation have success, but its a must before I become a surgical candidatea . I may also be a candidate for a pacemaker based on family history of sudden cardiac death in the age group of mid 30's. He put a monitor on me and I will wear this for 2 weeks to gather data to see if I need a pacemaker. My heart cell are not normal, which increases my risk for sudden cardiac death. I can continue to walk with light hiking, but I will never be able to compete athletically. The heart is amazing, kind of hard to believe with the seriousness of everything that I am able to hike. I am not able to be vigorous or over do it. I was very thankful for all of you who donated on my firrst trip down. I was able to pay copays, prescriptions, food, gas, parking, and hotel expenses. I dont know how else I could of done this. The plan is to go back down in 4-6 weeks to meet with the surgeons. This should only be an over night trip. Then I will be scheduled for surgery and will be in CCU for 3 days and themoved to a week recovering
Kevin here again. Visit to Stanford hospital was productive but we are in a time crunch to raise money to get Jessica this surgery and the device implanted. She is also now on more medications to keep her alive and functioning until then. More and more expenses. Please share our donate as you can. She means the world to me, her family and her and her children.
This is Kevin, Jessicas fiancé. We Had a long and productive day today. Got most of the testing and procedures done and will complete tomorrow and have appointment with surgeon. Will have all questions answered and know the what's, how's, and when's of everything. Only downside to today was wracking up $9,000.00 in medical bills. Hoping we can still raise enough to get thru this and still have a home for us and or kids. After the appointments today we did the tourist thing and went into frisco to pier 39 and checked out a few sites which was a relaxing way to end the day. We are back at the hotel ready to get a good nights sleep since we've been going since 5am. After tomorrows appointments my wonderful, beautiful, fiancé and i are going down to Santa Cruz and Aptos beach so we can have a nice lunch on the pier then a romantic walk on the beach. Then we are going to visit my wonderful family in Fresno for two days before heading home. Will be nice to see family, relax and have some quiet time with no stress, no kids to worry about and just enjoy visiting. Keep us in your prayers. Thanks. Kevin
Please help if you can manage it. i know things are tight for eveyone but we leave for Stanford in 5 short days and are no where close to our goal. this surgery will save my life but i cant get it done if i cant pay for it since my insurance is refusing to pay. please, please, anything helps...thank you and god bless
The count is on. I leave next Tuesday for Stanford. I will have a cardiac MRI, stress test, meet with my new cardiologist and a genetic counselor. Had my labs drawn today, which equalled 16 different blood test. Glad each day is getting closer, because I since that I might be worse. When I walk I have the feeling as if I had just hyperventillated. Kust a funny jittery feeling, tightness in my chest, and a heavy feeling. I walked for 15 minutes yesterday and was huffing and puffing as if I had ran. This wasnt the case a month ago with normal pace walking. I am very stressed out right now. I am worried about even making it through another day of work, another day of life or to Stanford. I have been told to leave fundraising up to everyone, well I did, but I am feeling discouraged. I have close to $500 to take with me on this trip and I am grateful for that; however, the same day I received a $600 bill for my cardiac device that I have to wear. I am not getting very far and I feel defeated. The medical bills just keep rolling in and I am overwelmed. I work to only keep providing and because I have to. I am not sure what is going to happen to me day by day. I am strong, but weak too. I have no freedom to relax. Several people have mentioned how tired I look. I just want to be back to me and get back into good spirits. I have good days and bad days. Today is a bad day.
Hate to say that the last 3 days have been not so good. I am retaining water, which is making my skin very tight and it burns. I can barely button my pants. My legs feel like they are going ereto explode. There is so much pressure. I have had horrible stomache aches and I am not exactly sure why. I am going to be referred to a GI doctor, which insurance should pay for. I recently applied for Oregon Health plan as a back up to all of my cardiac related claims being denied. Figured it would be worth trying, since I have a life threatening condition; however, I was denied for being over income and they are not accepting adults. If I dont raise enough money, I am facing the reality of post poning my surgery if my cardiologist at Stanford allows me to post pone treatment until September. September is when my Blue Cross will pay for my pre existing condition. I am quite stressed at this point. I keep running into obstacles with no resolution. I try my best to stay positive. I am battling symptoms that seem to sometimes get the best of me. I do my best at work and as a mom. Life just cant stop, so I keep busy. Yet, I wonder how much longer can I take this. I have some symptoms that I simply will not share with anyone. I eat well, getting plenty of fluids, fish oil, vitamins, and I walk about 300 minutes per day. There is really nothing else I can do to help myself. I am also putting alot of faith in God to help me. If I do not have some symptoms that go away, by tomorrow, then I will unfortunately have to go to the E.R. I dislike hospitals, because I spent a ton of time in them, when my daughter was sick with severe Epilepsy. She almost died a few times. Its sort of haunting. I feel good some days, but also have bad days. The last 3 days really make me question if my heart is getting worse, causing new symptoms, or I have another type of illness going on. I really hope nothing else is going on with me. I think my heart having obstructed blood flow is enough. I know my spleen is enlarged and I am not sure why. Right now my belly looks like a basketball and eating seems to make me feel worse. I am getting really concerned about myself due to this unusual stomache pain in my left side. I am so uncomfortable and really trying not to get depressed. Asking for lots of prayers at this point. Not sure what I am to do other than deal with this one day at a time. Thank you for listening. I am truly at a low this week.
Headin to work in a few and I get off at 8pm tonight. Fridays are my longest days. My goal today is to change my mood and remain positive. It is going to be a fight for me today. So far my day is not beginning well, but neither did yesterday. I have lost my addictive energy that I had the last several days. My hands, feet, and belly are puffy. Clothes are not comfortable. My fingers are tight when I bend them. Its just hasnt been a good last 2 days. I hope by the end of the day that I feel better.
Feeling really energetic the past few days. I think I am finally adjusting to my meds. Havent felt tired at all. I am also eating smaller meals, so this helps significantly. I am mostly glad that I havent had a pounding heart rate. I am grateful for all of the support and your kind words. I am 2 weeks away from heading to Stanford, so the count down is on. I would like to get to $600 by next week in donations. So please keep sharing my site. My cardiologists claims are being denied as of last week. Just another debt, but he will get paid regardless of my situation. He is an excellent caring man. Thank you again.
So I wanted to share that I received a letter from my local hospital approving me for financial assistance for any claim related to my heart or emergent needs. I will still have medical expenses, but this is going to help me significantly! This brings me relief. Now, to work on Stanford expenses, which will be much a much greater expense. Funny thing is, I am not afraid of my surgery or dying. I am only afraid of not being able to provide for the kids or getting behind in bills. Ya, my priorities may sound screwy right now, but I have always provided and worked. I do realize that my priorities could change, once I am actually scheduled for surgery. I am sure fears will change. I am just taking in each day and finding good in everything in my life. I am basically paying attention to details that I hadnt stopped and taken the time to appreciate before. Now, if I can just get rid of my yucky cold, I will physically feel better. Its no fun feeling short of breath with a chest cold and plugged up nose. Feel like a zombie today.
I have been doing fairly well. My job has been wearing me out. It is a high stress job with long hours. I have been taking Juice plus vitamins and walking daily for 30 minutes. I feel like I have no energy the last couple days. It takes me aboit a good hour to wake up. I have no motivation, but I keep fighting to carry on like nothing is happening, because I am trying to stay head strong. I am upset that my Blue Cross has denied my claims based on pre existing condition. I am checking into other health care options. I have appllied for financial assistance through the hospitals and all I can do is wait for that. I am a bit emotional lately about everything. I try to stay positive, but I cannot help, but to worry some. I am doing the best that I can. I am a bit surprised by little support I get when I am speaking to hundreds of people. I very much appreciate all who have helped and I am very aware that some people cant help. We all have our own worries and I would never expect to be top priority. I do have to wonder what prevents someone from at least sharing my page? It is only natural for me to wonder. I am new at asking or discussing my ailments. I feel if I am sacrificing myself by sharing my weakness, that at least I could be acknowledged. I realize I am not a child, but I am 36 with children who need me. One of my children is special needs. I try hard and support others. I just ask you keep sharing my story. I want to live a good quality life like we all should. I am raising money for traveling costs and temporary time off work. I still have hope that when I get down to Stanford Hospital next month, that they will tell me that I dont need surgery; however I cant imagine what could possibly fix me without it or what quality of life would I have with drugs and having my heart pounding out of my chest every night. Or, how will I regain my once energetic self? I still hang on to hope, even though I have been told surgery is my only option by two different cardiologists. I just want my life back. I miss getting right up every morning without being tired. I miss having energy to paint my house, cook a big breakfast, clean the entire house, cardio excercises, long hikes, wrestling with my son, etc. Now, I am just not interested. I want to be better. Please share with others and encourage them to share too. Thank you everyone who is caring and listening. At this point, I can only trust in God to lead me and my family with protection.
Sorry I haven't been on lately with updates. I have been busy working and have been exhausted. I am trying to get used to talking about myself, which I don't like doing nor do I like asking for help. Anyway, I have been doing really well considering. I began taking juiceplus vitamins and I have been drinking a ton of water and green tea. I lost a few pounds of water weight and feel much better. I saw my cardiologist yesterday and he said I am going to live to be an ancient mean old lady. It felt good for him to say that. I really like my doctor and he assured me that I will be okay. My pulse is 43 and my blood pressure is 96/57 which that is okay for me, since my heart needs to pump slower to allow more time for blood flow to be able to release throughout my body instead of obstructing it. The faster my heart pumps the worse it is for me, this is why I cannot excercise right now. Which really sucks. I am going to begin walking consistently since the weather is becoming nicer. I am sure hiking is okay as long as I am not vigorous about it. I can't imagine not hiking, that is my favorite thing to do. I was thinking back this time last year and how lucky I am that something didn't happen last year. Kevin and I hiked all over the place, especially during morel season. We carried big chunks of flat rock out even climbing up and down hills with back packs full of rock in the heat. Thank God I didn't collapse. I remember feeling dizzy a few times but just thought it was the heat. So many things could of already happend to me. I remember last year lifting weights and doing lots of cardio. I also was trying to work up a good run, played tennis too. I was just getting ready recently to start the P90x. Thankful I wasn't able to begin that. It probably would of killed me. Right now I am just taking in every aspect of my life and I am trying to be nicer. It is hard to not feel stressed when kids are driving you crazy. Overall I am fine. I dropped my goal down to $15,000 until I appeal with my insurance company. Right now I am saving for income and current medical expenses, and travel. This number will hopefully go down. For now I am not sure what the final expense will be.
I had a good day again! I was a bit uncomfortable un my jeans today, due to water retention. The Good news is, the swelling in my fingers is going down. I had alot of anxiety on my way to work, because I worry about what I will do when I am out of work and how much longer will I be uncomfortable. I try to stay busy and keep my mind occupied on other things. Tonight, I am drinkinking a disgusting glass of hot lemon water with tons of lemon pulp. It is supposed to help my body release the retention faster. I am always tired and I cant wait to feel better. I was glad to make it to church for the remberance of Christ. It truly changed my mood.
I am so thankful that I could be there and be reminded of why we are here and tjat God has a promise awaiting us. I am off tomorrow and I will have my bible study. I have also gone almost a week taking my Juice plus vitamins. I am doing what I can to benefit my body and fill it with nutrients.e
So today I feel good. I rested up all day yesterday and drank at least 7-8 tall glasses of water. I weighed myself this morning and was 4 pounds heavier. I have noticed my joints ache alot, especially my knees. Today, I drank a ton of water and green tea. I read that green tea can help with water retention. I am surprised that it is now 8pm and my legs are still puffy with my sandal straps embedded into my feet. I am a bit frustrated and wish I knew what was going on with my body. I spoke with the cardiology office today and the cardiologist wants to see me this friday. I just want to get rid of this excess water in my body and wish I knew how. I don't feel comfortable in my clothing or my image. I hope he has some explanation of how to at least be comfortable. At least with each day, my appointment in Stanford comes sooner. I am waiting anxiously. I am beginning to think a bit differently about life now. We are all here just temporary and it is up to us, to make the best out of whatever the situation is. I can't speak for everyone else, but this is what I am trying to change about me. I know that my biggest weakness is worrying to the extreme. It is not worth it to get worked up over everything. I watched Oparah Winfrey interview Beyonce yesterday. One thing Beyonce said was that she is learning to take her time. She has a problem with thinking something is wrong if she is not busy. Nothing is really wrong, it is just the way we all get caught up these days. The world is so fast pace and everything is expected to be perfect. There is no such thing as perfect. I have a problem nuturing everyone else and everything. If I am unable to do that, then something is wrong. I think this is why I am having such a hard time with accepting that my health isn't that great right now. I am no longer in control and that is a problem for me! I can't let go and let someone else do things for me, but I am slowly trying to let go a bit and allow this. Everyones life experiences are different and we really can't judge what others should feel like or how they should be. People are always quick to say "If that was me, I would of....! The best thing to do is to validate what that person is going through and try to help them in the best way you can and it doesn't have to be money. We can't help everyone, but we try. I know one thing, as soon as this is all over, I am going to help others who are going through this. I think life trials actually make us stronger people, even though they can be painful and unfair.
I am glad it is Spring and I look forward to the warm weather to come. The sun makes me happy! :-) Thank you all for your continued support. It's nice to know people really do care.
Felt pretty good yesterday. I took an hour lunch at work and walked around in the sun. I did notice shortness of breath just walking a short distance. Had minor palpatations, but I was ok. I keep wondering how I might feel after surgery. I have hope that I will regain my energy back and how.good I will feel. Today I am just being lazy, because I feel thats what my body needs today. Last Sunday, I planted flowers and fixed my rock garden. I think it is okay to have lazy days once in awhile
Last night I fell asleep on the couch about 9pm and woke up about an hour later choking and gasping for air. My throat was dry and I was unable to swollow or inhale. I started to panic and my 12 year old son freaked out and started patting my back. I finally was able to get air, but was dizzy and felt weak. It was sad to me that my son saw me do that. The look in his eyes were full of fear and he said "You scared me and you need to get into your doctors sooner." I was so tired and even felt too tired to walk to bed, but I managed. I finally fell back asleep around midnight and woke up exhausted this morning and had to face a 10 hour day. From the start today I have been full of heart palpatations followed by dizzyness and a pinching pain in my chest when it happens. I don't know if this is true symptoms or if it is anxiety at this point. I do know I have experienced anxiety before and I don't remember it being like this. I took lunch at 4pm today and was going to drive home for a bit to check on my kids and I had another episode while driving. I felt a flutter in my chest and felt my heart skip around and felt funny in my face. I pulled over and sat in my car for about 15 minutes determining if I should go back to work or to the hospital. I hate hospitals and felt worried if I went in there that I might not leave there this weekend. I also thought about leaving the office behind considering I have no back up today. Once my episodes went away, it was too late to drive the rest of the way home, so I went back to work. I try to tell myself this is only anxiety. I then noticed that everytime I bend forward, my heart wants to skip around. This makes me think it is not anxiety. I pulled up more information on my phone about my hocm(hypertrophic cardiomyopathy w/ obstruction) and choking. This is a symptom for some reason and I don't know why it causes this symptom. I have a call in to my local cardiologist's nurse, but it was already after 4pm. Chances are they are gone for the weekend and I will have to wait until Monday to speak to them. I hate this. I am not ready for things to go a different direction if that is what is happening. I don't have time and I don't have the means to be off work. This morning I prayed to just be able to carry on through the day. I didn't think I was going to make it through work today, but I managed. Tomorrow is another 10 hours and then I have Sunday off to rest. At this point I have no motivation and no drive to do anything. I hope my energy level comes back tomorrow. I am drinking lots of water. Hoping I can fit back into my pants in the morning. Some days have been better than others, so hopefully tomorrow is better. Praying that I don't end up in the hospital. My heart monitor should be arriving this next week from Stanford and I have to wear it for 21 days. To all that have donated so far, thank you very much. It brings a sense of relief watching some of these donations grow. I am just keeping my fingers crossed that I am not out of work for another few months so that I can buy time to get things in order before May 7th. Just keeping my head above water at this point. I am paying extra on my bills to try and get as far ahead as I can before I run out of options. I am going around the house collecting things that I don't have to have. Some things I dont want to part with but will, because I refuse to let things fall apart for my kids. I was reading a sad statistic at work that 40% of home forclosures are due to medical illness. We are truly invinsible and I don't care who you are. It can happen to anyone. Some of you may ask why I wasn't prepared? Honestly, I didn't have the financial means to purchase a disability policy. I made a job change in order to purchase health insurance, but I didn't know that within my 90 days that I would be in a medical crisis either. You have to make a certain amount of income to even purchase disability insurance. I maybe an insurance agent, but I don't control underwriting guidelines either. I wish I did. Not to mention I have only been an agent for a few years now and they would of found this in my medical records. One of the kick outs is heart disease. What do you do? You just hope for the best and that is all you can do. Believe me, if I would of had the money, disability insurance or critical illness would of been a purchase a long time ago. I still think I would of been denied even then. Too bad for me I guess.
Today has been an okay day, considering yesterday was stressful. Yesterday was my day off work and all I could do was worry myself sick. After the Gofundme site was posted last night, I felt worse. I am not used to being center of attention and I felt ashamed that I was in this situation. Those who are closest to me know this about me. I am pretty private with my life. It is depressing when something happens and it is out of your control. Your instinct is to fix it, but how when you are facing a possiblility of outstanding expenses and medical bills already showing up in the mailbox. It is becoming more and more overwhelming coming to the realization of "this is really happening!" I was not well yesterday either. I felt depressed, fatigue and sick to my stomache. This morning I woke up very tired and my hands were so puffy that I couldn't close my hands without the feeling of tightness. My pants were too tight due to my swelling. My medicine has made me very tired on top of already being as tired as I thought I could be, but I have to take it in order to slow my heart down. My swelling hasn't gone down all day at work and I could only just secretely deal with it. My circulation is definately off today as well. I have felt like an icebox all day and the tips of my fingers turned blue. I walked around with numb toes all day too. I would like to walk this evening, but it is too cold for me out in this weather. I am a bit down today, because I have been taking my emotions out on my family. I am really trying to just be me, but it is hard. I feel bad for the way I have treated my kids this week and my fiance. It seems my patience for anything is gone. I am feeling angry that I am going through this and angry that I feel this way. Where does this anger come from? It has to be from this reality, because my behavior has drastically changed since this has come about. Right now, I pray everyday for patience and a mild spirit, because that is who I want to be. I don't want to be this freak who can't control her emotions. People say "I don't know how your doing it" or "How are you so calm through this?" Truth is, I am not. I am not one to show myself in times of stress or at least I try not to, but somebody mentioned that I should blog this. I am doing this so that I can document this experience and to make myself open up to others. I have no idea where it will lead me, but maybe it will help me deal with my fears. I received an update that I have a couple donations and I am very thankful. My number sounds so high, but sadly is probably pretty accurate or under if anything. I am pretty disgusted that I received a letter stating that my condition is pre existing. I just wish it wasn't considered pre existing, since it was never serious until now. It seems like I have had some pretty big trials in my life. My daughter was diagnosed with Epilepsy at age 2 and had the most severe form. Through all of those years I don't know how we got through that, considering she almost died a few times. She is a miracle and through fighting our way through answers, we were able to find a surgery to stop her seizures. I was a young mom then and somehow we made it out of that roller coaster. The epilepsy caused her to suffer from bipolar and post tramatic stress disorder, which we currently deal with. I am not going to go on and on about sad things or challenges, but I know we made it out of that. Things have been tough, but we have never given up on anything or anybody. I know I will get through this. I learned recently that I will be seeing the head cardiologist, so I am thankful for that. Even if we don't meet the goal to raise, every bit helps to something. I will possibly have to cut back at work after I heal anyway. Right now I work long hours, but it is because I have to. The other worry for me is, which family member has this? We know my mother doesn't have it and luckily my children are okay, but we will see what the genetic counselor says in May about that. They could still be carriers to their children. This is a pretty sneaky disease and that is what is scary. I joined a support group last week for HCM(my conditon) and it seems to help alot reading about what others go through and getting lots of questions answered. The severity is different in everyone is what I am learning. Some people are fine, some people need defibrillators, some are on tons of meds, some get treated with alcohol ablations, some are like me who need surgery, some have heart failure, and some are on a list for heart transplant. There are people aging from babies to seniors. I will keep everyone updated as I learn more. At least today, I don't feel like crawling in a hole somewhere and have less symptoms. I am only tired and puffy today. I am trying to stay positive and I am also preparing for the possibilities of the unknown, in order to prepare ahead. Thanks again for listening and sorry if I am all over the place. I have never blogged before.
My name is Jessica King-Szoyka and I am 36 years old, a mother of 2, and am engaged to a wonderful, caring, man who has 2 children of his own, who I am pleased to call my other children ;-). I have always been a hard worker and I have stayed physically active all my life. I love swimming, hiking, fishing, camping, gardening, creating landscaping, painting, cooking, and designing, and exercising . My favorite things to do are working in my yard, going to the beach, camping, and hanging out with my family. When I was 21 years old I was diagnosed with Asymmetric Hypertrophic Cardiomyopathy. Essentially my right heart chamber wall is thickening and causing an outflow obstruction and irregular, even life threatening heart rate and/or rhythms. At that time, I was told it was nothing severe and that I just needed to be followed by a cardiologist with yearly echo cardiographs. My only symptom was heart palpitations. Over the past five years my symptoms have been mild, with pounding heart, some shortness of breath and awaking in the middle of the night gasping. I was put on a medication about 5 years ago to control these symptoms and it helped. I have been monitored each year and things remained within normal tolerances. about 20 months ago i had my last Echo and it was okay still and approx. 14 months ago was my last visit with the Cardiologist who changed my medication due to side effects but recommended continued monitoring with another Echo a year later. over the past 14 months i gradually developed more symptoms such as gasping for air while I am sleeping, shortness of breath, dizzy spells, visual disturbances, poor circulation, edema, and a pounding heart beat. I thought it was just stress due to new career or even lack of continued regular working out due to new job. but then i noticed that I couldn't breath well while working out or going on walks. This past December, I felt funny while I was driving and thought I was going to pass out and my nose was tingly and numb. Weeks went by and I started having visual changes and was near fainting at work on a few occasions. this prompted a few doctor visits to figure out what was happening with me. After several trips to the doctor, and getting referred to a doctor that specialized in mysterious cases, He ran blood tests that equated to possible heart failure. this provoked more blood work and a repeat Echo, which then showed my heart condition had drastically worsened and blood flow in and out of the right side of my heart are seriously obstructed. this obstruction is caused by the condition causing additional , fiber like muscle to grow in the Septal wall of the heart making it thicken and bulge inward, reducing the chamber size and shape and causing the heart no longer be able to pump properly. After getting a 2nd opinion with a trusted cardiologist i learned my only option at this point is open heart surgery. the have to go into the heart thru the chest wall and scrape away the thickened tissue inside my right heart chamber. Southern Oregon has the best cardiology dept. in the country, but they do not specialize in my condition. As a matter of fact there are only a handful of cardiologist in the country that even do this surgery and are well versed with this condition. As it is we have already incurred thousands of dollars in medical expenses since January 2013. I have been referred to Stanford Medical Hospital, because they specialize in this disease and the doctor there is the leader in this field and condition. I have no disability insurance and I am going to lose income by being out of work and so will my fiancee as he will be transporting us to and from Stanford and of course will be there for me as I go through this. Health insurance is available but also has implemented a waiting period that is not available to me as the surgery needs to be done soon and ins. company wants to hold off for 6 months. even if insurance pays though, we will still be looking at a minimum of 20% of surgery which in itself is approx. a 25,000 bill and doesn't include all the pre and post operative care and cardiac rehab. we are trying to get help to pay for medical expenses of course but also, traveling expenses(hotel, gas, food), and loss of income(3-4 months worth of mine and 1 to 1.5 months of my fiancee's).my time off will be incurred all at once with the surgery and recovery, my fiancee on the other hand will be taking the time off as needed for the surgery and bringing me home and for additional care and appointments. It is not in Our nature to ask for help, but our biggest worry is that we won't be able to provide for our children and keep our utilities on and rent paid, not to mention feeding everyone. We are under a tremendous amount of stress wondering how we will be able to make it through all of this but we remain strong in our faith and humbly request anyone that has the means, to please, please help us get through this scary life experience.
This is what I've earned from all the great people that came to the charity event "Laughter, Lyrics & Libations for Life". I managed to sell most of the shirts and we sold a bunch of tickets. Thank you to all the people that came and to everybody that helped out. Thanks to the bands that played Murky Friends, Matthew Fischer & The Fishes, Bone Clone, Mothers Superior, Cha Kung Laos, and Shabbadoo 3.0 Beta. Also, to the comedians that came and did a set. It was a really good time for a really good cause.
Also, not to forget - thank you Matthew Fischer and Kae for letting me throw the event there.
Friends at Fatty's Bar & Diner
From the help and generous donations of the mighty fine folk who haunt the jauntiest of haunts of Bangkok; Fatty's Bar and Diner.
First and foremost - the proprietors Matt Fischer and Kae Maeboonruan who without their help this couldn't have been done.
Also, my friends - all who have purchased and donated towards this fine cause:
Shane Flipping Palko
And the guy from the Stone Free Music Fest
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