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.
I have HCM. My left atrium is getting pretty big. I have aflutter all the time now, and I am having problems getting rid of it. All the ablations I have had are causing clotting - even under thereaputic INR. For the first time, my cardiologists are suggesting to get on a transplant list. Obviously this is daunting to me, and I want to solve my LA/arrhythmia problems any other way I can. However, I spoke with a friend the other day who had a transplant, and she said, don't wait, just do it. I will feel great. Plus I heard young HCM patients traditionally do well. I guess here are my first/biggest questions:
How invasive/difficult/time consuming is the work up?
Once I find a center and am recommended, how long would I have to wait (I think I qualify for 1b or 7)?
How risky/painful is the surgery? How long does it last? How long am I in ICU?
What how many meds do I take those first few months? Side effects? What type of life do I live those first few mos?
How long before I start feeling better, and living a somewhat normal life? How many meds do I take then?
Do I have to watch out for diabetes? Do I have to stay out of the sun? Can I drink?
Is it uncomfortable to have a heart-rate driven by adrenaline?
Do I get sick all the time from anti-immuniation drugs?
I want to have kids and see them graduate college and get married. What is my expectancy?
What are my biggest risks for rejection, failure, or other end stage scenerios?
Please let me know your thoughts. I might be more or less likely to go this rout, based on what some of you say.
Some of your questions are impossible to answer because they are an individual thing. The first thing I want to say is that the things I'm writing here are based on my daughter's transplant. I don't know what kind of transplant, or prior diagnoses, your friend had, but my daughter didn't see much difference after her transplant. I think that the Dilated Cardiomyopathy patients feel the greatest difference, because of the type of heart failure they are in. As far as going into heart failure (CHF) with a transplanted heart, quite frankly, it has to be rare from our experience. My daughter has has CHF 3 times that I know of at this point being 10 1/2 years out. Checking with the Hypertrophic Cardiomyopathy Association, with 40,000 members world wide, they don't know of anybody who developed CHF with their new heart. As far as the testing prior to transplant, most of it is the normal stuff: EKGs, Echos, Blood Workups, Caths, Interviews, that type of thing. You will probably have sessions with the hospital social workers as well. People are usually placed on a list by the TRANSPLANT TEAM when they feel the patient has about 18 months of life left. Not sick enough, or too sick, you don't go onto the list. usually they look for patients that are still working, at least part time, and somewhat functioning. Those patients usually have the best outcomes. Transplantation is not a cure for heart disease, it only extends life. The life can be extended for 20 more years in some patients. Coronary Arteries tend to get clogged up quicker in the transplanted heart. Also, the ventricles are usually transplanted, not the whole heart. Adrenaline can play some havor if you aren't used to it, but after awhile, it becomes less bothersome. Do NOT hang around in places where there is a lot of people smoking! The adrenaline will kick in, my daughter landed in the ER over that one. I wouldn't consider drinking with a transplanted heart either; the sun isn't an issue and as far as I know, neither is diabetes, unless you have that prior to the transplant. take your drugs on time EVERY time and that will help you to avoid rejection. Most rejections are managed at home with drugs, but if you get a bad rejection, say a Grade III, you will need to be hospitalized with IVs. If you are sick and miss a dose and can't take the next dose, it's IV time, even if given in the ER. The surgery itself varies with the patient because things like previous surgeries can make things take longer to do, due to scar tissue. My daughter's surgery lasted about 4-5 hours, but she had a lot of scar tissue from an open heart surgery. She stayed in the PICU for a few days and then went to 'Step Down' for another day or two and then out onto the regular floor. We were out of the hospital after about 10 days; the record was 7 days on the floor. The risk of surgery depends on how sick you really are; some patients don't make it off the table, others do very well and go on to live long lives, it just depends on the individual. My daughter's first six weeks at home, we had to give her a drug through a pickline because there was a virus in the new heart; obviously, not everyone has to do that. The worst of the drugs for my daughter was the prednisone. That really came as a shock because the side effects of that drug were not the norm and it took quite a bit of convincing to get the transplant team to finally quit using it. My daughter also has Steven-Johnson Syndrome which means her body doesn't break down drugs the normal way; we stopped keeping a record of the drugs she couldn't take when we hit the 50 point. So for her to take the antirejection drugs without much trouble is really something!! if there is a problem with it now, it is the fact that now she gags everytime she tries to take them, it isn't much fun! Most people don't get sick all the time from the drugs unless you don't tolerate drugs. You do have to be careful about staying away from anyone that is sick as you immune system will be compromised. Wearing a mask isn't much help either because the mask only protects you for about the first half hour! I would never base your decision for translant on what anyone on here writes, it is an individual thing and it may, or may not be, the best thing for you.
My father had a heart transplant back in 1988. He's doing really well. yep, not a typo, 1988.
Back then they didn't know what was going to happen 3 years out, as they hadn't been doing them that long.
It wasn't bad for him. he was 43 at the time. He needed one due to an acute MI.
He was in the hospital about 1 week. He was waving to me 2 hours after surgery from isolation.
The surgery takes less time than CABG from what I've heard, my father's took about 5 hours....Because oddly enough it's less complex.
I just remember my father not asking any questions at the time. he was on death's door step so it wasn't a tough decision. Below is a letter I wrote to the donor family near his 20th anniversary. Perhaps this will help with some clarity :-)
Dear Donor family,
I am the son of the man who is the recipient of your loved one’s heart. Words cannot express my family’s sympathy and condolences for your loss back in 1988. My father, 43 at the time, was in otherwise very good shape. He suffered a massive heart attack, was given 6 months to live, and was immediately placed on a transplant list. He was married with 3 children.
He was able to wait at home, with a pager, but his congestive heart failure was getting worse by the day. Insurance didn’t cover some costs so we did months of fund raising. A beef and beer event, cake sales, selling chances, and charitable organizations in the area got involved. This was a healthy diversion to something otherwise completely out of our control.
Heart transplants were uncommon in 1988. A new break-through medication called cyclosporine was making transplant outcomes much more successful. A heart donation and this medication were our only hope.
We got the call that a heart had been donated that was a match for him after about a 5 month wait. This was about 11:00 pm. We rushed him to the hospital. By 1:30 am we were wheeling my father into the O.R. He was anxious but remained brave, positive, and calm. I gave him a hug, told him I’d see him in a little bit, but in my head I was saying goodbye.
My mom and I waited, in a deserted hospital, in the middle of the night. My sisters waited at home. They wanted so badly to be there, but I insisted they stay at home. I didn’t think my father was coming home and I wanted to protect them. I wish I had reacted differently.
At about 6 am, as the sun was coming up, the surgeons came to get my mom and I. They brought us to see him, he was in isolation and we could not enter the room. He was on a respirator and looked like he was still under general anesthesia. The nurse leaned over him, spoke into his ear, and he waved to us. I could not comprehend what I was seeing, relieved, scared, uncertain, and astonished all at the same time.
My thoughts were with your family as I looked up at the heart monitor and saw the beats, steady and strong. In the coming days, I constantly watched his heart monitor. “Dad, you OK?” one eye on him, the other on the heart monitor. “Yes, I feel fine!” he’d say. I knew we all (both families) had many challenges ahead and we started taking on each day at a time.
My father was back to work in a few months. He came back to full health quickly, it seemed in days. He had some challenges with rejection, but these were mild and addressed with medication adjustments. Rejection was not an issue after a few months. The years have passed and his body continues to accept the heart. He’s now on low maintenance doses of the anti-rejection medications and has stopped one altogether.
He’s treated his heart transplant with the utmost respect and gratitude that it deserves. The way he’s treated his body, his family, and lived his life is testament to his gratitude and respect for the gift of life that you gave him. After almost 20 years, your loved one’s heart still beats strong and is sustaining life.
I feel that I have to apologize for how overdue this note is. We asked the transplant team about sending along a thank-you note after the surgery. I remember being told that they would pass that along for us and they discouraged recipient families from contacting
donor families. I recently decided to research on the Internet and found this protocol evolved over the years. I decided I wanted to reach out and thank you again and provide an update.
We recognize his transplant every year on the anniversary and we thank your family in our hearts. I wonder where the time has gone as we approach the 20th
My father has given back by working with the transplant program in the Philadelphia area that helped him. He meets with people that are pre and post op. These folks are anxious and unsure about their future. Meeting my father and hearing about his outcome has given hope to many. A lot of good has come from it and has touched many lives.
I’m sitting in our family room finishing this letter. My daughter is asking me what I’m working on. I took a moment to tell her about what happened 20 years ago, again. For a 6 year old she knows a lot about it. “How did they match blood type daddy?” our conversation begins. She asks about your family and if you’re OK. I explain the procedure to her and I let her take in what she can. She told me to say thank you for her pop-pop.
You have and will always be in our thoughts, hopes, and prayers.
p.s., my father's NR is now back under influence of his ANS. I think something like 40% of HTs will show re-innervation of the parasympathetic and sympathetic nerves. We know this because his resting rate is about 70 these days. When he was first transplanted it settled in at about 100 which is the heart's natural internal rate.
He had excellent exercise tolerance from the start, never had a problem with adrenaline controlled HR.
You'd be amazed at how quickly this kicks in.
My father didn't get sick, even when at one point 5 of his grandkids were in daycare :-)
He did, however, have some mild problems with skin cancer. This is a concern with immunosuppressants. He had a basal cell removed (they thought it was a melanoma). It's just something you have to be more aware of.
The worst side effects he had were from the prednisone, which he was taken off of many years ago. He's now on imuran and cyclo.
Itdood, if your father was in Dilated Cardiomyopathy he would experience a major change in the way he felt after his transplant. CHF patients always do. If this gentleman has HCM, he may not have the same affect, my daughter did not. The one thing she did notice was her ability to do math in her head and to remember certain things changed greatly. She had some improvement in her exercise tolerances, but it wasn't major. Why? We don't know. Some people feel much better afterward, some HCM patients don't see much difference.
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