Heart Transplantation

Posted by packrat @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?

Interested in more discussions like this? Go to the Transplants Support Group.

@dannyc

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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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.

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I waited a year for mine in 2007.

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@mel

I waited a year for mine in 2007.

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Hi Me:
Can I ask what was your blood type and did you have any antibodies. Where was your procedure done?
Rich

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@dannyc

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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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

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@dannyc

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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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.

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@mel

I waited a year for mine in 2007.

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I am O-, I was never told that I had a problem with antibodies and I had it at Mayo Clinic , Rochester. Which has a wonderful program!

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@dannyc

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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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

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@dannyc

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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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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@dannyc

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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Just wanted to shout out… I used to work as a heart and lung transplant nurse in the ICU (MB6E) at Mayo.. if you have specific questions let me know. The surgeons are wonderful, and the nurses are trained so well that you may be rest assured when you get the call- you’re in good hands. I left Mayo only because of health issues myself. I miss it dreadfully.
I know that if a surgeon wanted their patient to be a priority they would admit them and put them in the CCU with a SWAN (a big IV that sits in the heart)… this puts you at the top of the list. The UofMN and Mayo “fight” for organs… but Mayo being as large as it is- often the donor is within the same building.

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@dannyc

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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Rich-
Florida’s program is fairly new, even though the staff may not be… staff were recruited to Arizona and Florida to train them… this may account for the smallish numbers.. I know in MN we did a lot more than that a year!!

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