I would like to hear from others who were on the waiting list for a donor heart to find out how long you waited before a Heart was available?
Interested in more discussions like this? Go to the Transplants Support Group.
Because I was waiting for a heart and a liver, my waiting time was more complicated, and I waited amost 2 years. Had it been a heart only, I think the waiting time would have been approximately 6-9 months. Be sure to ask your docs what your STATUS is; that is a key indicator.
Jump to this post
Thanks Danny. How are you doing? When did you receive your new organs? My status is 2 which means I am not in the hospital however on constant infusion now. Are you in Florida?
Hi Rich. I’m now living in Chicago, where 3 of our kids live. I’m originally from Cleveland, so Chicago is closer to the many trips we take back to the Minnesota Mayo Clinic. I received my new organs in April of 2009, and my current health exceeds my most optimistic projections. I hope you get the same results. Before my surgery, my docs stressed that the best thing I could do to prepare was to exercise, particularly the “core” muscles. Imeediately after the surgery, i realized how wise that advice was.
I am so glad to hear how well you are doing. As you know this waiting can play havoc with your’s and your spouse’s mind. Just the stress of not knowing when? Interesting you are from Cleveland, I went to Kent State and graduated in 1971. Yes, just after the confrontation.
I do exercise by working around the house, not much of a go for a walk type. I get Tired quickly. What kind of exercise have you done? How often do you have to return to the hospital and for what?. I ask because my wife and I would like to retire outside the USA.
You asked how often I return. For heart transplant patients, the Mayo Clinic protocol calls for the patients to remain in the area for 3 months after the surgery. Then, I had to return every month for the first 3 months; after that every quarter. After over 2 years, they are beginning to stretch out my visits to 2-3 times a year.
As you will find out, while the surgery itself is complicated enough, the post treatment care is equally difficult, as the docs try to find the correct balance of just enough immunosuppressants but not too much. And the only tried and true way to determine rejection for a heart transplant is a heart biopsy. I trust you know what is involved there. Since my transplant, I guess I’ve had about 12 biopsies.
As for my exercise, walking is still the best. And try to keep your legs strong. Unlike your situation, I was in pretty good shape going in to the surgery, but I was astounded how weak I was in the weeks afterward.
We have a friend from Serbia who had his transplant at the Mayo Clinic in Rochester. The docs there were very helpful in finding a hospital in the Czech republic that was familiar with heart transplants. So I suggest you ask your docs for help after your surgery. My guess is that your move outside the US may not occur for a longer time than you might think.
I was told to stay near the hospital for 2-3 months for the follow-up care, so I am looking for a short term rental. Is that what you did?
Is the biopsy done with a punch type biopsy needle? What brand/ type of immunosuppressant are you on. Is it in pill form? Does it make you blouted? I have checked with the International Dept. and they have a Mayo trained Cardiologist in the country we would be going to.
May I ask how old you are? What caused your organ failure? How did you feel when it started and progressed?
At the Mayo Clinic, they have a home for transplant patients. It’s very inexpensive ($25/day), and meticulously clean. We stayed there both before and after my transplants. The biopsy is noit what you may think; it’s closer to a surgery. Your are given an anesthetic, wheeled into the OR, and a team of docs/nurses awaits. The doc inserts a probe, usually through the neck, and snakes the probe into the heart. Once there, snippets of tissue are taken for examination of rejection. After about 2-3 hour recovery, you are released, but your activity is restricted for the rest of the day.
My currect immunosuppressants are prednisone, mycophelonate, and sirolimus. In addtion to these, I take several other medications; some of these are over the counter. Many patients have experienced bloating; however, I did not.
I’m 64. In 2006, I went for a routine physical, complaining of some shortness of breath. One test led to another, all this at the Cleveland Clinic (my home then). The diagnosis was familial amyloidosis, and the Cleveland Clinic recommended that I go to the Mayo Clinic. Throughout the waiting, I led a completely normal, pain free life; but my heart was silently failing. We moved to Minnesota in October of 2007, and waiting 18 months for the transplants–remember, mine was a double transplant.
Thank you Danny for being so open and discussing these concerns I have.
I was wondeing how long after your surgery before you felt real well? Have you found many things which you are restricted from doing? I was told I can’t garden because of the concern of mico-organisims and bacteria. One of my big concerns is all the cost of post-op care and the inability to work to cover expenses. I have insurance through my wife’s employer but if she leaves all coverage ends. Have you found it hard to financially exsist after healing?
Hi Rich, the first month after the surgery was difficult, for two reasons: 1) the surgery itself is a major shock to the body, and 2) the dosages of immunosuppressants are at their highest, and the body is trying to adjust to them. As a result of those, you won’t have much of an appetite, and you won’t sleep very well. After a week, you should be walking short distances. After 6-8 weeks, you should be feeling pretty well, but you will still be very weak. After 3 months, I felt as though I had 70% of my strength; it was 6-9 months before I had all of my strength back.
I feel now as though I can do anything I want–except I still feel short of breath when i go up a couple flights of stairs. But I exercise about 5 times a week, and I walk a lot–more than I ever have.
One of the friends I met at the Transplant House also had a heart transplant. He was a pig farmer from Iowa. He was told in no uncertain terms to get rid of the pigs (too strenuous and too dirty). He sold them within a week. He now farms corn and soybeans, but he is very careful with the dirt.
I have been insured through my wife’s State of Ohio insurance, even though she is retired. It continues to provide excellent coverage. Since I was on Social Security Disability for 24 consecutive months, her insurer moved me to Medicare (even though I’m not yet 65). The immunosuppressants continue to be covered with no problem.
Before my surgery, we had a 4 bedroom home in Ohio–where we raised our 4 kids. They have all moved out of Ohio, so we sold the house while we were waiting for the surgery. We now live in a very down-sized, one-bedroom apartment in Chicago. I guess you do what you have to do.
Hope this helps
Happy Labor Day weekend. Have the Dr’s. said why you are still short of breath post implant? Currently that is what I am experiencing and it requires I take breaks from what I do and I get tired after just a couple of hours physical work. Do you recover quickly and continue doing physical things?
Do you require having the supplemental insurance with the Medicare? Did your SS Disability stop once you were transplanted? After transplant can you get life insurance?
I have 4 children as well which have all moved away however, because of divorce I do not see them. My 2nd wife has 3 children and 6 grand kids which live out of area we do see.
Do you know how your donor became a donor- the type of injury? Have you had any strange feelings with the new organs?
Thank you for answering my questions Danny. These are the kind of questions the Dr’s don’t answer..
Connect with thousands of patients and caregivers for support and answers.
Already have an account? Sign In