Kidney
Has anyone felt like they wanted to have more of a relationship with their living donor ? Or less ?
I was pretty confident that I would find a Living Donor. Once I decided to share my story one year into Dialysis the response was pretty amazing in that several people came forward who knew me with enthusiasm going to get evaluated to be my donor. This started a feeling inside of me that I would have a special relationship …a deeper one with my eventual donor. This may seem to sound crude.. but sort of like the bonus getting to live longer life and have a special relationship with someone. My anonymous Living Donor turned out to be someone very special, but very different from me in many ways and not very interested in being close to me, unless I joined in their religious activities…. This all may sound a bit bizarre …but wondering if anyone has had a desire to be closer with their living donor? or the opposite … needed space?
TransplantLyfe Favorite
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I had 2 transplants, my first from a living donor and my second from a deceased donor. my living donor was my brother (It's actually his birthday today!) and obviously we are really close. I have a very different relationship to that transplant than I do my deceased donor (which is the organ I have now), and not just in the obvious ways. I've chosen not to know my deceased donor family at all, and I think part of that is due to how I feel about my living donor
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Feel free to comment even if you did not have a living donor? Did you desire to know the family of a deceased donor? To have a closeness?
@AliEm14 congratulations on having such a wonderful family member. I actually applaud your ability to not long to find the family of your deceased donor. It is a peace that I have not come to grip with yet.
@Jay I truly believe that if I had a living donor, that I would have similar feelings to what I think you are experiencing. I would only hope that you can come to peace with your donors lifestyle wishes. Oblivously, I can't even begin to understand either side of relationship.
I long to be in contact with my donor's family. Not to be a factor in their lives, but just to know about him/her. To let the family know that they have someone that talks to him/her regularly. Basically, to tell them that I am thankful everyday for my "gift of life."
Thank you @AliEm14 for sharing so honestly. When I did the training to become an Ambassador for the Gift of Life in Philadelphia…just 11 weeks after my transplant…a liver transplant recipient spoke about his burning desire to hear back from the family of his deceased donor. He said that for 17 years he had written to the family but never received a response … he broke down crying about his desire to one day hear back.
PS: I took my donor out to dinner last weekend to his favorite Italian restaurant. I was so excited to see him and tell him how well I was doing. I will be seeing him again on Sunday. We are planning our 4th annual kidney anniversary family dinner for the first week of December.
I can’t say I’d like less or more of a relationship as my donor is my husband. However he and I recently discussed this and he wishes he could have done it anonymously. As it has drastically changed how outsiders see our relationship and how they oddly have a sense of ownership in our relationship. For example we are forever bombarded with people gushing over how romantic our match was, and the reality was he was watching the mother of his 5 step children die- romance had nothing to do with his decision. And when we are at family events and I may become short with him (as spouses do in stressful moments) I will often be berated by family and reminded how I “owe him my life”
we don’t enjoy the attention it gives us and we just want to live our life as normal as possible with a little hun-bub about our transplant as possible.
I had a living donor through the paired kidney exchange. My friend donated on my behalf which I am grateful for but I do have the desire to know more about my living donor. I know their age, gender, and where they had their surgery done/ where the kidney flew out of. I dont know anything else. Sometimes the curiosity kills. I have written a letter to them and sent it to my transplant coordinator to pass on- never found out if she did that or what transpired. Ive recently thought about following up with that. I think I would just like to say thank you at the very least.
Transplant Patient
My two living donors are my dad and my sister… so I am super close and became even closer after their donation!
Best Friends for life! for sure!
My first living donor was my mother, Patricia Ann Brattland. Unfortunately, she passed away in 2014. My second living donor was my Cousin Johnny Goette, to this day we are remarkably close and chat all the time over email. When he is in town we always hit up "Point Loma Seafoods" for the best tuna sandwich in town. I think the bond between the donor and recipient is a beautiful thing!
@Jay Yes, I would like to know more about the deceased donor. But! I want to do it without exchanging names for privacy reasons, not just for my privacy but for the donor and the family’s privacy. Because it is such a sensitive situation, I cannot help but think it will make that family relive that pain all over again.
The only thing I do know about my kidney donor is.
He was the same age as me.
And it was a low-risk kidney, and it is a perfect match.
If I had the chance to send them a letter I would want to ask, what are his hobbies? Did he have a favorite sport? Did he like to fish? What was his favorite band or music?
I would like his family to know I am living my life to the fullest just as he did.
More, as much as the family is comfortable doing. It is good to be reminded of the gift your life is and all that you can live for your donor.
Earlier on this thread, I wrote that I longed to know the family of my deceased donor. Well, I received my wish. Last week I got a letter and we have had to rather lengthy conversations. I am so happy. I even talked with the sister and brother of my donor.
She had my letter for a few months and just now was able to reply. If you are like me and want to know, be patient. Hopefully, in due time, you will get your answer.
I wrote a letter to my donor’s family and I might not get a reply after two years of waiting.
I am having a really REALLY hard time deciding if I should reach out to my donors family or not. I have a hard time letting people down, and many people don't even know I've had a transplant. Even thought my transplant(s), kidney/pancreas same deceased donor, are doing very well I struggle with the "what if" and letting yet another person down. Yes, I realize there is a whole mental load there that I'm slowly working through. I have so many letters written to my donors family, but if I'm honest I haven't even explored how to reach out to them, and I think that's my answer... More than a year later I have messages for them but I still haven't ever explored how to contact them. Together with my therapist I'm still considering being anonymous, and providing an update. As a mother I would want to know the good that my deceased child had done, and I don't want to deprive my donors mother of that.