A lot of questions

[aaron]

It's been quite a while since I've written anything in these forums. I'm in the end stage HCM now and definitely feeling it. On Monday I go in for my right cath and a slew of other tests, phych evaluation, etc. I don't really know where to begin.

Things really dropped off a cliff three weeks ago when I dropped into some really bad rhythms (v-tach then v-fib - implanted defib needed to shock my heart 9 times before a good rhythm was restored) and took an ambulance ride to a hospital where my lungs filled 3/4 with fluid. I came through that and was placed on Amiodorone. Dr. said that this was one of the most (perhaps the most) powerful anti-arrhythmic drug available (Q1 - is this true? What are people's experiences with Amiodorone?)

A week and a half later I went into another bad rhythm and took another ambulance ride. So, that evening I felt so on edge, like jittery, on the edge of a cliff so to speak, like I could drop into another bad rhythm at any moment (Q2 - has anyone else ever felt like this? Like the slightest movement would send you into a bad rhythm?) The nurse wanted me to walk from my bed in the ER to a gourney to be transported to my inpatient bed. I told her I didn't want to but she persisted and I did so. After taking about 5 steps my heart rate accelerated from 60bpm (paced base rate) to 104bpm. She tried to play it off as "anyone who does activity will raise their heart rate". But I know my heart and it doesn't respond like this normally, especially with all the meds I'm on. That night was pretty rough for me, but I got through it.

A couple days later they did a stress test to see how well my body burnt oxygen. I didn't do very well on this test. And after that we began to talk about getting a transplant. My blood type is AB, which I hear makes me the universal recipient. They said that after the evaluation I would be placed on the transplant list as a Level 2. (Q3 - has anyone on this forum been a level 2 and gotten a transplant? If so, how long did you have to wait? What was your experience like?)

I live in central PA and I am registering with my home hospital, Hershey Medical Center. (Q4 - Has anyone here had a transplant done at this hospital? Who did it? How did it go? Q5 - Do you consider this a good transplant hospital? Q6 - Should I register at multiple locations? Which locations, considering where I live?)

I live in a two story home and every night I make my way upstairs by going one step at a time, resting a lot along the way. Sometimes I get very cold feet and hands and the tips of my fingers, toes, and tongue feel numb. (Q7 - Anyone else experience this?) It's during these times that my heart seems to be more on edge and minimal physical activity accelerates my heart rate quickly, but not into a bad rhythm, because I have learned that if I completely freeze and wait for the moment to pass I can sometimes prevent these rhythms.

I'm sure that I have many more questions, but this is all I can think of right now. If anyone feels like sharing their experiences with me to help give me a better understanding of my situation, I would be greatly thankful.

Aaron

[Midge Rollins]

Re: A lot of questions

Aaron, I am so sorry for the problems you are having. Your story has a familiar tune to me. I was never on Amiodorone but I know it is pretty powerful and not without side effects. Dr's usually do not like to have their patients on it for long term. I am not sure what your 02 level was with your stress test but I do know that is a very important test when preparing for transplant. Mine got down to single digits. Steps were very difficult as well as any inclines. Jitteriness comes with arythmia's. Hershey has a great transplant program and one of the transplant docs speaks at the HCM conference every year. One thing with this Dr. is I think he is a little gloom and doom and wants to portray the life of a transplant patient as exchanging one set of problems for another. I DO NOT agree. My life while precious is so awesome, I feel great I can do steps, play with grandkids, go 90 miles an hour on an almost daily basis. I have never regretted my decision. My blood type is O+ and I waited 18 mos. at a level 2 and then went to a 1 B for 2 months and received my heart that was 8 years ago. Keep us posted. any more questions feel free to ask.

[Reenie]

Re: A lot of questions

Aaron, I'm sorry you're having to go through this. Hopefully someone who has been through transplant will answer you soon. I do know that amiodorone is a very good anti-arrythmic medicine. I don't have experience with transplant myself but if you read the other threads here you may gain a lot of information.

[aaron]

Re: A lot of questions

Another question I just thought of is... if rejection is not an issue, what is the survival rates? Rather than statistics, I'd like to hear from real people who have received a transplant and how long they have had it. I guess statistics would be nice too.

[Largehearted]

Re: A lot of questions

Aaron. Sorry you are "hitting the wall" with HCM. I don't really have experience with Amioderone (although I am on a related drug) or with end stage. All the best on your journey. BTW. We are neighbors. I am from Central PA as well.

Peace,

Leon

[gfox42]

Re: A lot of questions

Hi Aaron,
I was on amiodarone for several months following afib that I had as a result of my myectomy. I didn't have any noticeable problems with it, but then I wasn't on it for all that long. As Midge says, there's a strong transplant program at Hershey.

Gordon

[SteveinMadisonAL]

Re: A lot of questions

Aaron,
Wow, like Midge, I can really relate to the quality of life you are experiencing lately. Long story short, I was diagnosed with HCM in 2010, went downhill fast and found myself in end-stage CHF last fall. I went into cardiogenic shock and was airlifted to the University of Alabama in Birmingham and qualified for a heart transplant at level 1B. While I waited, I had an IV pump and milrinone pumping into my heart to strengthen my heart muscle. I too, was told the "trading one set of problems for another" story. Due to my common blood type, I was blessed and received my donor heart on 2/13/2012, "just in time" for Valentines Day (I was only on the list for 2 months). Today, I'm almost twelve weeks post transplant and am feeling "back to normal". I'm jogging 30 minutes 3 times per week and working full time again. I've regained the 25 pounds I lost along the way and am having very few reactions to the anti-rejection drugs. With heart transplants, you have to be sick enough to need the new organ but healthy enough to receive it, so if the doctors are saying heart transplant is the next step, then I highly recommend taking the trip. It took me two months to get used to the idea. You must be geographically close to the center that will be treating you. Birmingham is 1.5 hours from my house, I've already made 20 trips there this year -- now, I'm on a monthly schedule. So, if you have a good hospital close by, as Midge has confirmed, then there is nothing else to consider. If you are interested and want to read my trip through heart transplant, go to www.caringbridge.org/visit/steveburcham. I don't think I actually answered your specific questions, but hopefully have encouraged you to not be afraid of transplants and to really get busy getting qualified. God Bless!

Psalm 20,
Steve

[macbeth]

Re: A lot of questions

My son received a transplant two years ago after waiting for 8 months in the hospital on a milrinone IV pump. His blood type was O+, and he was 24, tall (6' 1") amd thin, which made it difficult to get a suitable heart.

Post-transplant, his results have been outstanding. To date, no rejection problems or other issues (he just had his extensive 2 year check-up). His hobby now is running 5K, 10K, and half-marathons. He doesn't set any records, but he finishes every race. He jogs around 20 miles a week, and tells me he has logged 500+ miles since the start of the year. He's also started cliff-climbing and kayaking. He's making up for lost time.

I want to echo what Midge said above. We knew my son's transplant was going to be needed for many years, and the doctors always gave us the "one set of problems for another" story, and it scared us, and it generally isn't true. In the time we spent on the transplant floor we knew quite a few transplant patients. Every month the hospital had a dinner for all those who had received transplants, or needed them, so we heard many stories. My opinion, and this is just an opinion, is that the heart transplant patients fall into roughly two categories. The first is the patients whose only problem is their heart, and they are otherwise (relatively) normal. My impression is that they do well post-transplant. The second group (much smaller) is patients who need a heart, but whose other organs are compromised in some sense. Among these are patients who (for example) received chemotherapy at a young age, and the chemo damaged their heart, lungs, and other organs. Another is patients whose heart problem has caused damage to the lungs, liver, or other organs. This second group has a higher likelihood of problems, but many still get excellent results (otherwise the doctors wouldn't give them transplants). I think sometimes the doctors who are pessimistic about transplants don't properly take into account these differences. I really wish we hadn't been scared by their comments, because we learned that transplants can be a gateway to a much, much better life.

Regarding how long a transplant lasts, they told us their goal is at least 15 years. They pointed out that the survival statistics published today include people who received transplants in past years when the post-transplant rejection drug management process was not as sophisticated as it is now. My impression is that they hope transplants made today will last much longer than 15 years.

They also told us that, for 99% of transplant patients, rejection is not an issue. The anti-rejection medication process is well understood. They primary concern with my son is the long-term effect of the anti-rejection drugs on his other organs (e.g., bone marrow). For that reason, he frequently tested, and they tailor the drug schedule so that he is "minimally medicated" and has no rejection.

Off-hand, I know about 10 people who've had transplants who think it is the best thing that ever happened to them.

[mbcube]

Re: A lot of questions

Aaron - I have nothing to offer you but I'm glad we have the resources today to help you. I'm thankful for those who have been involved in transplants are sharing their knowledge with you on this board - Everyone helping one another . . . Thanks HCMA!

[purple_ness1]

Re: A lot of questions

I took Amiodorone for a little bit before transplant i cant say i was a big fan of it but you get to the point where you are popping so many drugs ones just as bad as the other but yes i think Amiodorone is a pretty power full drug but that's a good thing it means it has better control over your arrhythmic, Im not sure what level 2 is as our system is different to yours im from nz so cant answer your next to questions either, and yes before transplant i use to get numb ears tips of my fingers and toes its because your heart is weak and its not pumping the blood round the body fast enough and i don't know statistics but iv had my heart for 3 years and its been the best 3 years of my life iv had about 5 eps of refection but im still going strong and loving every min of it a transplant is so worth it in so many ways.

[canterbury]

Re: A lot of questions

It's been quite a while since I've written anything in these forums. I'm in the end stage HCM now and definitely feeling it. On Monday I go in for my right cath and a slew of other tests, phych evaluation, etc. I don't really know where to begin.

Things really dropped off a cliff three weeks ago when I dropped into some really bad rhythms (v-tach then v-fib - implanted defib needed to shock my heart 9 times before a good rhythm was restored) and took an ambulance ride to a hospital where my lungs filled 3/4 with fluid. I came through that and was placed on Amiodorone. Dr. said that this was one of the most (perhaps the most) powerful anti-arrhythmic drug available (Q1 - is this true? What are people's experiences with Amiodorone?)

A week and a half later I went into another bad rhythm and took another ambulance ride. So, that evening I felt so on edge, like jittery, on the edge of a cliff so to speak, like I could drop into another bad rhythm at any moment (Q2 - has anyone else ever felt like this? Like the slightest movement would send you into a bad rhythm?) The nurse wanted me to walk from my bed in the ER to a gourney to be transported to my inpatient bed. I told her I didn't want to but she persisted and I did so. After taking about 5 steps my heart rate accelerated from 60bpm (paced base rate) to 104bpm. She tried to play it off as "anyone who does activity will raise their heart rate". But I know my heart and it doesn't respond like this normally, especially with all the meds I'm on. That night was pretty rough for me, but I got through it.

A couple days later they did a stress test to see how well my body burnt oxygen. I didn't do very well on this test. And after that we began to talk about getting a transplant. My blood type is AB, which I hear makes me the universal recipient. They said that after the evaluation I would be placed on the transplant list as a Level 2. (Q3 - has anyone on this forum been a level 2 and gotten a transplant? If so, how long did you have to wait? What was your experience like?)

I live in central PA and I am registering with my home hospital, Hershey Medical Center. (Q4 - Has anyone here had a transplant done at this hospital? Who did it? How did it go? Q5 - Do you consider this a good transplant hospital? Q6 - Should I register at multiple locations? Which locations, considering where I live?)

I live in a two story home and every night I make my way upstairs by going one step at a time, resting a lot along the way. Sometimes I get very cold feet and hands and the tips of my fingers, toes, and tongue feel numb. (Q7 - Anyone else experience this?) It's during these times that my heart seems to be more on edge and minimal physical activity accelerates my heart rate quickly, but not into a bad rhythm, because I have learned that if I completely freeze and wait for the moment to pass I can sometimes prevent these rhythms.

I'm sure that I have many more questions, but this is all I can think of right now. If anyone feels like sharing their experiences with me to help give me a better understanding of my situation, I would be greatly thankful.

Aaron

Hi Aaron, Like everyone else on here, I can feel for what you are going through and I will try and answer some of your questions. My daughter had a transplant almost 13 years ago (on July 5th) and she was also on Amiodarone for 3-4 years, so we learned how to deal with that. 1) It is a VERY potent drug. The side affects to this drug are numerous. My daughter had hypothyroidism, restrictive lung disease, corneal issues with crystals among other things. People on Amiodarone need to stay out of the sun and/or keep covered up while outside. Even on cloudy days you still need to keep covered! My daughter went out canoeing once on a cloudy day for a couple of hours. She was pretty much covered up and yet still got burned so badly that she swelled up and even her hands and fingers were so swollen, she couldn't make a fist. We had to cover her in cool damp towels....something I'll never forget. 2) I think you can tell if you are close to having arrhythmia issues. I don't know about getting jittery, as my daughter NEVER described that as an issue, usually that type of feeling comes from a lack of blood sugar in your system. She did know that laying a certain position in bed and even standing up at times would throw her into an arrhythmia. But understand that your anxiety can do that as well, it may not be an issue due to your HCM. 3) I'm not sure about the levels you are talking about, they were never discussed with us. One thing I do know is that for the most part it is how closely you are matched to a possible donor that tends to play a HUGE role in who gets a heart, it is not always determined where you are on the priorty list. My daughter waited approximately 18 months before she received her first call,; because she was on her last dose of an antibiotic, she was denied that heart and went back on the list for another 8-9 months. Her experience with the actual transplant wasn't too bad although she was in the PICU for several days due to a morphine intolerance. She was out of the hospital within 10 days and when she came home she was on a pic line for medications for several weeks.
4-5)I can't speak for hershey Medical Center as I have never been there. I just heard about the center yesterday if you can believe that! I was looking up an old friend, Michele Monaco, to call him and found out he was working there as a pediatric cardiologist! Usually transplant centers like to have their patients within about a two hour drive from the facility while awaiting a new heart. Usually when you get the call, that time allows for you to get to the hospital and have all of your pre-surgery testing done such as an EKG, chest x-ray, blood work etc.
7) cold feet and toes are common symptoms for heart disease and once you have a new heart, you may find that all improving. Take care

[canterbury]

Re: A lot of questions

Another question I just thought of is... if rejection is not an issue, what is the survival rates? Rather than statistics, I'd like to hear from real people who have received a transplant and how long they have had it. I guess statistics would be nice too.

You have to understand that each person is an individual. Some patients can live for years; the oldest surviving patient at our hospital (University of Michigan) is 22 years out. My daughter is almost 13 years out. While this first patient is doing incredibly well, that has not been the case with my own daughter, so no one on here can really give you a concrete answer to this question.

[lj]

Re: A lot of questions

My sister got a heart transplant she's had for 10 years now. She experienced one scary episode of rejection where she told me that she couldn't breathe, went to the hospital and her doctor told her that good thing she came in just in time. She is a B+ blood type with the following observations or findings by her doctor, 8 months before she was listed. She got her transplant 2 months after listing.
fatigue, cyanosis of fingers if walks a block
exertional dyspnea not at rest
abdominal bloating, cold all time, feet
fall asleep, palpitations & lightheadedness
w/ activity
Impression: NYHA class IIIB due to low
cardiac output

My sister told me that she was so out of breath trying to do the threadmill 2 months before her transplant. She was also volume overload.

My other sister complained that she was cold all the time and dizzy at rest, as well as crawling on the floor because her feet were so swollen; she may have mistaken this for gout or may have been a combination of gout and heart failure. Her doctors thought that she was depressed, even though they knew the family history that my brother died of HF and my other sister got a heart transplant. And by the time they listed her, she died the next day. She had poor management of her HCM because she never saw an HCM specialist and was only seen by EP doctors prior to her listing. Her cardiac index and cardiac output were both worse than the sister who got the heart transplant by the time she was listed.

All my sisters and mother were on Amiodarone. They all developed Graves disease or hyperthyroidism. The sister with the transplant had Amiodarone toxicity to the point she developed a thyroid storm and stroke. She was in the hospital for a month. My other sister had no effects from her stroke and my mother decided to live with a-fib and get off Amiodarone. My sister with the thyroid storm and stroke did not heed my warning that our other sister got Graves disease. I told her that Amiodarone has a short life and she needed at one point to get off of it; soon after, and regretfully, I had to see her hooked up to all kinds of tubes and put on a balloon pump to save her life. Fortunately, she stabilized after a lengthy stay and rehabilitation (from aphasia) and after 2 more years got her heart transplant.

I'm sorry for what you've been going through and hope this helps even though some of it is scary as I've been through this with my family history as well as it's my turn now.

I recently met a lady who has the same heart doctor as me; She got her heart within 2 hours of dying she told me. Now, she says that she's had her transplant for about 2 years and her ejection fraction is only 35%. She's in heart failure again. Her advice to me was to live for everyday and that a transplant like my doctor says can have its own set of problems.

I too agree with you that if you freeze for a moment, you can prevent the bad heart reactions. I currently practice meditation and in one scary episode where I was gasping for breathe, I focused on a point and my heart suddenly stopped racing and beating out of my chest. Also, I avoid bending over due to sudden palpitations and SOB. My best position is to sit, laying back at about 45 degrees rather than at a 90 degree angle where I compress my diaphragm which at times changes my BP. I also put my feet up off the ground. I have a bed now that rises my body so the water doesn't go into my lungs when I'm retaining and have less SOB because I've found that my chest pain is worse the next day if I sleep flatter.

lj

[canterbury]

Re: A lot of questions

Hello Aaron, My daughter was on Amiodarone for a few years. It is a VERY potent drug and once stopped stays in the body's tissues for up to a year. It can cause restrictive lung disease (which it did in my daughter) along with hypothyroidism (again with my daughter) and you can get sunburned, severely, even on cloudy days; my daughter had to be wrapped in wet towels one time when this happened...she also swelled up like a balloon. But she didn't have any arrhythmias while on the drug.
One of the things you were writing about was whether or not people felt like if they moved or did something, their heart would jump into an arrhythmia; if I read that right then I can tell you that all my daughter would have to do to jump into an arrhythmia was to turn over in bed or cough. It was enough to put her into A-Fib. The problems she had with V-Tach always happened while she was sleeping. I have no idea what 'level' my daughter was at when she got her heart. One thing we were told, however, was just because a person was at the top of the list did not mean that they were the first to receive the next available heart; the tissue matching was, in some cases, more important. We waited 8 months to receive our first call for her heart and she did not get it because she had one dose of antibiotic left for broncitis; we went back on the list and waited another 8 months; she received her heart in the wee hours of the morning on July5th 1999. She just celebrated 13 years a few days ago. It has not been an easy road for us and I agree with one of the previous writers that some patients who have more trouble are the ones that have issues after the transplant. At this point, we don't know how long she has left so we make the best of the time we have. At U of M where she had her transplant (actually C.S. Motts Children's Hospital) the oldest transplant patient is doing GREAT at 22 years post transplant. He visits us when we are there.