This patient support community is for discussions relating to transplants, anti-rejection drugs, financial and insurance issues, long-term issues, organ rejection, pre- and post-surgery, and waiting list issues.
Hi. I am a 38 yr old female, was a fitness instructor for 16 years prior to "getting" cardiomyopathy. I am lucky enough that this situation has been caught early on, and am currently being managed with medicines and a much more sedate lifestyle. In reading up about my condition, and from talks with my cardiologists, I am aware that at some stage I may be a candidate for a transplant. However, I am curious if anyone can point me in the right direction of reading up (on the net) more about how they determine who is a potential candidate and who isnt... I was readinga post this morning on the Heart disease forum where the Cleveland Clinic had commented that the patient in question didnt sound like a likely candidate, yet the same post had acknowledged that the same patient didnt have a very rosy prognosis based on what had been written. I had previously assumed that a patient became more likely to get on the T- list if their symptoms/health status was more severe... perhaps different countries have different assessment criteria (I am in Australia), but that post did make me realise that there is very obviously a whole lot more to it than that. Can anyone help me find more information? It wouldnt change my situation, I am just very curious now...
I do not know a great deal about heart transplants. I do know a bit about the liver program. As far as I know the allocation of donor organs is supervised by UNOS. In general their selection criteria is to get the donor organ to the candidate with the most need (this usually means the sickest candidate). There is balance provided to rule out some patients where the chances of survival or success are slim and where the operation would not be likely to provide a reasonable benefit. For example: you would not want to use a scarce donor organ for a candidate who had a terminal disease with a short life expectancy that would not be improved by the transplant.
Here is a link to UNOS site. In the section on policies they show the criteria for listing and receiving donor organs. I am not familiar with the criteria for heart transplant candidates, but you should find useful information in that section.
In order to be placed on the transplant list for a heart, usually you have to be in a Grade III or Grade IV level. In other words you must be symptomatic at rest. People often times think the transplant goes to the person at the top of the transplant list, not true. Everything depends on compatibility. A person who is at home actually has a better chance at surviving a heart transplant than a person so sick they have to remain in the hospital. Another thing is that people think that transplants are permanent and give a full life; any doctor who tells you that is lying to you, find a new doctor. Truth is that transplantation is a band-aid, it extends life only. Origionally, the transplant patient had an extended life span of about 5 years, that was when they first started doing transplants. Now patients can live several more years. There are patients living with transplanted hearts for a period of 20 years. My daughter is going to celebrate her 10 mark in July. Her diagnoses was a severe Bi-ventricular Hypertrophic Cardiomyopathy along with several electrical problems with her heart. It takes a lot of effort to go through this kind of transplant. The strict regiment of drug taking schedules can be very hard to handle after a period of time, my daughter has gotten to the point of gagging trying to get her pills down every day. Always remember that transplants are not permanent; at some point you would have to be retransplanted. You will proably have to go through several physical and mental evaluations as well.
Everything still feels very surreal, even after almost a year since my diagnosis. I am grateful to not be needing a transplant at this stage but at times I have wished I did so that I can move from this restrictive purgatory, where I cannot be the person I was or want to be. I'd like to go even take my kids to the park, which is directly across the road from our house, without feeling like I am going to pass out from the physical effort it requires, or to sit and watch my favourite movie without the nausea and chest discomfort. The reminder of it being a bandaid, and not a cure, is significant to someone in my current position - thank you. I think somewhere in my head I thought that a transplant would be the answer to me being "restored"; the reality of it is very different. I appreciate you sharing a bit of your daughter's story. I am curious, was your daughter waiting long for her new heart from when she learnt she would need one? I remember the first doctor I saw when I was first admited to the CCU being the head of the transplant team, and thankfully I havent needed his expertise yet, but I can remember my fear, mixed with hope, mixed with more fear...have never been able to shake it, really. It is comforting to be able to express thoughts here on this forum, and also to ask without feeling embarrassed or afraid to ask. Thank you.
I really feel for you! A good friend of mine who is a Pediatric Cardiologist told me that with a heart transplant you are only exchanging one terminal illess for another....you are basically giving yourself AIDS because your immune system is decreased from the drugs. Well, he was probably right in the beginning; my daughter can now handle a cold! (a few months after the transplant she developed a simple cold, landed in the hospitalfor a couple of days, sent home, landed back in the ER and set by ambulance to UofM where she had her transplant) She was so sick they did a bone marrow biopsy that Saturday morning to rule out cancer! Will write more later, I have to go for now....take care,
I'm back!!:) You asked about how long we waited for a heart when we found out our daughter needed a new heart; Let's see... how do I answer this? We found out about our daughter's heart disease when she was just 6 years old. It was a fluke that we even found out. When she was 3 years old, she developed Juvenile Rhuematoid Arthritis. On top of that her body could not break down ASA, but we didn't know it at the time. She ended up with internal bleeding and was admitted to the hospital. The nurses noticed her heart rate was too low so they called the pediatrician, he ordered an EKG. and then a second one because they thought the machine was broke; no one had ever seen an EKG like hers before. She had several electrical problems in the heart (RBBB,LBBB, SSS and W-P-W. If that wasn't bad enough she had both ventricular walls the thickness of a grown man. None of her pediatricians wanted to talk to us about it. I knew things were bad by the way people were treating us and by the comments that were being made to a friend of mine whose son had a heart murmur; "be grateful, Mrs So and So...your son will get life insurance unlike Kristy." That mother was my best friend and the doctor who told her that knew it. We went a better part of a year with fighting between an internest who did Kristy's first echo and the pediatrician who had taken too great a fancy to my daughter(according to the other pediatricans in the office; they were telling me he had lost his objectivity) We went to Great ormond Street Hospital for Children and was told that other than W-P-W our daughter was fine! Got back to the states and saw our first Pediatric cardiologist who was straight forward with us and told us our daughter had a fatal illness. We were told at that point that she needed a transplant in order to live. She was 8 years old. From there we were moved to dallas/Ft Worth and the pediatric cardiologist there sent us to Houston. They gave us the same prognosis. She did not have a good childhood and the teen years were worse. She had an open heart surgery for the W-P-W ablation, several cath ablations and EP Studies, several bouts of arrhythmias that they had to shock her back into normal rhymns. It's been a life! At 16 we saw a transplant doctor, she refused the transplant at that point because she would have to get rid of the dogs, they were her life. When she turned 17 we had a house fire that killed all of her pets and our two dogs, a 3 yr old Great Pyrenees and an 8 month old Airedale puppy. Things really went downhill after that fire. We moved up here to Michigan and she started going to U of M. They put her on the transplant list and we waited almost a year for the first call. Unfortunately, she was taking the last couple of doses of antibiotic so we were turned down for transplant; we waited another 8 months for the next call and she had her transplant at that time.
Anytime you need to ask questions I'll be around.
Wow, there is a lot of good information that Silvia has given you. I have never had a transplant, but I work with transplant clients every day in a hospital. I have worked with heart transplant clients for three years, going on four, and I can say that it is its own world. If you can hold onto your heart for as long as you and your cardiologist deem necessary, then good. Sometimes your organs do not allow you that luxury.
What Silvia said is very true. You become an "aids" patient once you are on immunosuppressant medications after receiving a heart transplant. The clients that come in for evaluation for heart transplantation, most of them, have a pacemaker/difibulator placed that helps them achieve normal heart rhythem.
If you want to, I would talk to your cardiologist further about heart transplantation, and whether you are a headed in this direction or not. I know that the heart transplant surgeon that is at our center says that the longer you hold onto your natural organs the better.
Thank you for your responses. This is a topic that I have found very few people actually want to discuss, with the exception of my docs. I think it makes them too uncomfortable, or the people I know simply cannot relate. I wanted to be able to get a grasp on my thoughts and feelings, to learn more, to talk with people for whom this is a real experience, and really appreciate your input.
Just on a side bar here......the EF isn't a determining factor necessarily for transplantation. The EF is different in the different cardiomyopathies, before transplatation because one cardiomyopathy is a systolic form of heart failure and the other, is a diastolic form of heart failure. many of those patients have a normal EF before transplant. I don't remember reading what type of cardiomyopathy 3dragons has.
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