Changes after Transplant

Posted by 2011panc @2011panc, Nov 22, 2016

I have learned that following a transplant there are many changes beyond your physical situation. What is your experience? Has your mood changed? Are you happier, calmer, more agitated, more anxious, more relaxed or something else? Do you feel you have changed emotionally, spiritually or mentally? Do you feel that your personality has changed? I am curious about more than physical. I appreciate your input on this issue.

Thank you for this reply and for explaining the process. I am envious of your very positive experience as I wonder all the time about my donor. This may sound silly but I talk to my liver and pat myself as I do so. I am very aware that there is now another part of me and a part which is the reason I live. It feels good to talk.

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@wildcat I was not even told Sex and Age. And have sent a letter but have heard nothing. I think for me i was very moved by a television special i saw where a donor family met the recepiant of there loved ones Heart. I also received a Heart so it hit home. The wish of the donor family was to actually hear there loved onces heart again so they were set up with a stethoscope and there was not a dry eye in the house including mine. I keep hoping but know i may never hear. And actually the tv show meeting was 7 years after transplant so it may take a while. Im currently 1.5 years post.

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@danab

@wildcat I was not even told Sex and Age. And have sent a letter but have heard nothing. I think for me i was very moved by a television special i saw where a donor family met the recepiant of there loved ones Heart. I also received a Heart so it hit home. The wish of the donor family was to actually hear there loved onces heart again so they were set up with a stethoscope and there was not a dry eye in the house including mine. I keep hoping but know i may never hear. And actually the tv show meeting was 7 years after transplant so it may take a while. Im currently 1.5 years post.

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@danab I think you are right that it may take more time. I am nearly 9 years post transplant and now I know quite a lot about my donor and her family. I met her father and we maintain contact. However, I did not hear from them until 3 years following my transplant. I realize and respect that some families may never be ready to meet the recipients. I still have only met her father, as the rest of the family prefers to keep a greater distance. That is okay with me.

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@wildcat

Thank you for this reply and for explaining the process. I am envious of your very positive experience as I wonder all the time about my donor. This may sound silly but I talk to my liver and pat myself as I do so. I am very aware that there is now another part of me and a part which is the reason I live. It feels good to talk.

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@wildcat I didn't realize until I read your post that I also touch and talk to my pancreas. I also am very aware that I have part of someone else inside of me, as well as some titanium, mesh, screws, etc.

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@wildcat

Thank you for this reply and for explaining the process. I am envious of your very positive experience as I wonder all the time about my donor. This may sound silly but I talk to my liver and pat myself as I do so. I am very aware that there is now another part of me and a part which is the reason I live. It feels good to talk.

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@wildcat I talk to my liver too. Promise to keep it safe and healthy. I make this promise to my donor too. I haven't written to my donor's family yet but am slowly constructing what I'll say in my head. I don't know if the donor was male/female, young/older or where they came from. I wanted to give the family grieving time first.

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Yes, I also have a pig valve helping my heart to pump so that's an interesting conversation!

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@wildcat

Here in Scotland we are not given any information at all about our donor other than his/her sex and age. We know nothing about the circumstances of death or family details.

We are encouraged to write a letter of thanks to the family after six months; I can honestly say it was the hardest letter I have ever written but I was determined to write it and felt honoured to have the opportunity to express my heartfelt thanks.. I also sent a card, via my Transplant Unit, on the fifith anniversary to tell them I was very well and to thank them once again.

It seems from some of the comments here that this is different in the US, perhaps even different in each state. Obviously, I often wonder about my donor and his family. I am interested in others thoughts; did anyone find this knowledge difficult or unsettling? Is it common to meet the donors' family?

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@wildcat as @2011panc commented, often little is known, it’s up to the donor family and recipient, how much they wish to divulge. I wrote a letter of gratitude to my donor’s family and they responded, almost a year later, and told me quite a bit including her name, and signed their names. Like your donor, my donor was a very caring young woman, and very healthy. Her death was due
to bad management at the hospital ER so her widower has been very vocal and is trying to get legislation passed to guarantee this will never happen again. Of course when I saw an article in the paper I immediately recognized her name.
I think my case is highly unusual though.

Speaking of labs too, mine just moved from every month to every other month. I am almost three years post transplant. I have them drawn locally and then they are brought by courier, “stat”, to their lab in MA which gets the results right to Mass General. It’s great because I have them available that afternoon, usually by 2:00!
JK

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Just wanted to let you know that this week's Mayo Clinic Connect member spotlight highlights a member who has been active in this discussion on changes after transplant. Get to know more about @2011panc, her Connect experiences and what she enjoys on and offline.

Finding open, honest conversations with others: Meet @2011panc https://connect.mayoclinic.org/page/about-connect/newsfeed-post/finding-open-honest-conversations-with-others-meet-2011panc

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