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packrat
@packrat

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Joined: Aug 25, 2011

Heart Transplantation

Posted by @packrat, Aug 25, 2011

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?

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DannyC
@dannyc

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Joined: Aug 30, 2011
Posted by @dannyc, Aug 30, 2011

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.

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packrat
@packrat

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Posted by @packrat, Aug 30, 2011

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?
Rich


DannyC
@dannyc

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Joined: Aug 30, 2011
Posted by @dannyc, Aug 31, 2011

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.

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packrat
@packrat

Posts: 12
Joined: Aug 25, 2011
Posted by @packrat, Aug 31, 2011

Hey Danny:
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.


DannyC
@dannyc

Posts: 8
Joined: Aug 30, 2011
Posted by @dannyc, Aug 31, 2011

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.


packrat
@packrat

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Joined: Aug 25, 2011
Posted by @packrat, Sep 1, 2011

Hi Danny:
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?


DannyC
@dannyc

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Joined: Aug 30, 2011
Posted by @dannyc, Sep 2, 2011

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.

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packrat
@packrat

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Joined: Aug 25, 2011
Posted by @packrat, Sep 2, 2011

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?
Thank,
Rich


DannyC
@dannyc

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Joined: Aug 30, 2011
Posted by @dannyc, Sep 2, 2011

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


packrat
@packrat

Posts: 12
Joined: Aug 25, 2011
Posted by @packrat, Sep 3, 2011

Hi Danny:
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..


DannyC
@dannyc

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Joined: Aug 30, 2011
Posted by @dannyc, Sep 3, 2011

Yes, the docs have explained my shortness of breath. It comes from my new heart now exacly matching the existing base, so there is some leakage in the tricuspid valve. (I really don’t understand it, but I trust that their explanation is legitimate.)

I recover immediately from shortness of breath; honestly, I don’t know how to distinguish fatigue between my transplant vs. getting older. At any rate, I feel as though I’m doing better than most guys my age.

I did not get supplemental insurance, but I honestly don’t know if I’m right or not. I have not investigated life insurance, so I can’t help you with that.

I know only 2 things about my donor: 1) it was a “she, ” and she was 58–4 years younger than I was at transplant. Your question about” strange feelings” is the same one I had before transplant. And the answer in my case is: I have had absolutely no strange feelings. It is as though someone changed out the fuel pump in a car–and the car works as well as it used to.

By the way, I made one attempt to contact the donor family, but I received no response.

I don’t mind these questions as all, as I understand that these are questions docs cannot help withj.


packrat
@packrat

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Joined: Aug 25, 2011
Posted by @packrat, Sep 6, 2011

Hi Danny:
Could I ask–Considering what your body, mind and family went through- would you do it again? Or would you live out the rest of your life without the procedure?
Rich


DannyC
@dannyc

Posts: 8
Joined: Aug 30, 2011
Posted by @dannyc, Sep 6, 2011

To answer your question, you must understand my frame of mind before any of this came about. For at least the last 30 years, I had been exercising and doeing a good job of keeping healthy. At the age of 60, I did not take any medication regularly. I never had as much as one stitich. Since my parents were both alive–in their late 80’s–I figured I had at least 25 more years to live.

I voluntarily went to my family doctor for a physical, and he expreessed some concerns and sent me to some cardiac specialists. I was certain these were false alarms, as I felt fine. When they first mentioned the possibility of a transplant, I was stunned–surely they had made a mistake.

But I’m the type of person who trusts people. And, when the Mayo Clinic confirmed the diagnosis, my attitude was: OK, let’s get this over and done so I can resume a “normal” life. In retrospect, that attitude was naive.

There is no question about it: this is a lfe-changing surgery. By that I mean that, if one is not prepared to rigidly follow the post surgery regimen, one would be making a mistake. And the Mayo Clinic people drilled that into my head during the 18 months when I was there in Minnesota waiting for the surgery. And, when the call came, I was actually happy that my “normal” life might resume.

During my surgery, my new heart was installed, immediately followed by the liver. After the cardiac portion, the cardiologist explained to my wife that my heart was in worse shape than they expected. When those words were conveyed to me, I never have had any second thoughts about having the surgery.

I don’t think I would be here today without the surgery. However, I recognize that the medication I am now taking is very potent, and often damaging to the body. It may someday threaten my life. But, as I have mentioned in earlier posts, I feel healthier than most of my contemporaries. So I glad I had it, and I’m glad the surgery is behind me.

I hope this helps.


packrat
@packrat

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Joined: Aug 25, 2011
Posted by @packrat, Sep 9, 2011

Hi Danny:
I am getting worn from waiting. When the phone rings and its Mayo I think it is for the heart. I looked up the statictics for Mayo Jacksonville and they have only done 7 hearts this year according to OPTN. There are 20 people waiting. Does that mean I have a 3 year wait? Also, what blood type are you and body height? I understand people with rare blood types get hearts quicker than O positives. I am over 6 ft. so I wonder if shorter people will get hearts quicker? Maybe I’m thinking too much.
Rich


DannyC
@dannyc

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Joined: Aug 30, 2011
Posted by @dannyc, Sep 10, 2011

Hi Rich,
In my opinion, you are thinking too much–and this is quite normal. I was certainly guilty of the same thing.

Some quick answers to your questions: rare blood types do appear to have some advantage; and shorter people do not have any advantage (I’m 5’4″). I’m A negative.

And most importantly, you do NOT necessarily have a 3 year wait. However, there is simply no way of predicting just how much longer your wait will be. The only help I can suggest to give you some indication is to ask your docs two questions: what is your STATUS, and how many people with your blood type are ahead of you. There may be 20 people waiting, but they have not have your blood type or, if they do, their status may be lower than yours. And even if they are your blood type and have the same or higher status, there are still other factors that the docs consider.

The waiting is the toughest part, Rich. Just try to hang in there. Dan

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