General
Dealing with survivor’s guilt?
August 31, 2026
in General
Hi,
Does anyone with a deceased donor organ struggle with survivor’s guilt? It seems like such an under-discussed topic in the transplant community. How do you deal with it? I was a teenager when I received my kidney so I do think part of it is due to being at that age, but I’m 9yrs post-transplant now and still struggle with it a bit. Any tips or shared experiences would be incredibly appreciated.
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Quite a meaningful question. I got my liver at age 64, have puzzled the same. I have a way to send an anonymous letter to the donor’s family, but have not done so because my recovery has been sub optimal. Hopefully, I will settle down at some point, and send that letter.
but, dang, getting my head around the whole thing, and finding the right words, is way beyond me. At the moment. Yes, guilt is a big part of my puzzlement. “Hey, sorry about your loss, but I’m doing great!” Really?
and, I got my liver after only 2 weeks on the waiting list, and a low MELD score. Did I get my organ ahead of someone who was more in need?
nothing in life prepares you for this. And nobody I know has the foggiest idea what we are going through. Lots of smiles, head nods, and kind words like “l know”, “l understand”, “you are so lucky”. But, of course, they can’t know, they can’t understand. And they never will.
hang in there. Best wishes from someone without an answer for you, but does, really, understand.
I have incredible survivors guilt. I see a therapist twice a month. I am almost three years post liver transplant and that has been an issue. I may be new in the game, but I think I am adjusting to knowing someone loved humanity enough to leave something behind with grace. Respect. I wrote my donor family letter. I am moving through life with an angel on my shoulder. I know things can come into your mind like self-worth, a desire to live an epic life. An almost obligation to live an epic life, but even on those mundane days. That's why they left a part of themselves. To give someone else the opportunity to embrace the mundane things. Even when you are worried about being good enough, you are.
I received my liver transplant in 2023 and met my donor's mother two weeks ago after sending notes of gratitude for almost three years. Hearing from her that she was "grateful" that I was keeping her daughter's legacy alive made a huge impression on me. I think it is important to remember that the gift we have received is not as a result of someone intentionally dying for us but intentionally deciding to give the gift of life to us. Be grateful for every moment and live with a purpose.
Hello,
I do understand what you are going through. I had my liver transplant back in 11/2022, and I still have this feeling. In the first year, I couldn't stop thinking that because of someone's death I was able to get my life back, and now that person's family could be without a father or a mother or maybe a young child.
I was happy that I gained my life back, but at the same time I was feeling so guilty for depending on someone's death. The transplant team didn't tell me who was the donor, no information at all, until 3 years after my transplant I asked them to let me know if was a father or a mother, because my feelings of having a family out there that lost their head of the household or a mommy that left her kids missing her was devasting. I had many struggles, and I still feel guilty for surviving.
My husband thinks that it could be someone who was involved in an accident during the Bikers Week in Daytona because my transplant was during Thanksgiving and I was at the TGH in Tampa. But last year I was able to get some information from my transplant team, and my donor was a young lady in her late 20s, and that was all they could say to me. I still feel so guilty thinking that a young woman died and gave me a second chance in life, but I still don't know what the cause of her death was. I feel obligated, and I should say honored, to live my best life and, with her spirit by my side, to represent her in the best way possible. Sometimes I think I was chosen to continue something good for both her and myself.
I believe that with time we'll adjust, focus on gratitude, and minimize the guilt.
My motto is: Gratitude is the meaning of life🙏
This is a great conversation and as someone who just received a kidney from a deceased donor back in February of this year, I at times have sadness and wonder how the family is feeling each and every day. I've written the letter to the donor family and would love to hear back and share with them that your son gave me a 2nd chance to live my best life and be with my family and my kids. But I do understand I may never hear back and I am beginning to make my peace with it. Really do appreciate everyone's own journey and them sharing their insights, it is always nice not to feel alone in it.
Transplant Patient
Yep! I got my liver transplant at 23, and ended up with 2 transplants back to back. The first, which was a living donation from my brother where we both suffered immense complications, failed immediately and I was re-transplanted a few days later from a deceased donor.
I do wonder how much of being a young person in the transplant space changes things. I didn't even really have time to figure out who I was as a person before transplant, nor was my brain even fully developed enough to comprehend what was happening.
None of the "be grateful" rhetoric, or living each day to the fullest logic ever helped me. It probably made it worse, actually. What has helped is therapy (a lot of therapy.) And becoming really comfortable with death. I write about it a lot, and I've published pieces and spoken on a national scale about the mental toll of being a teenager who is also dying and also navigating having a dead person's organ inside my body. I don't think I've come to a place of peace about it. The survivor's guilt exists, and I exist alongside it.
I never reached out to my donor family, nor do I have any desire to. That might change, but right now having that degree of separation feels right. But I also second there's no right way to do things. No one prepares you for this. Especially as a young person.
Transplant Patient
Hi @kidneythief 👋
You're not alone. I'm sure we all think about our donor heroes and we also most definitely think about the grief that the donor's loved ones have to deal with. That is normal. Whenever there's a death, there will be grief. In my story, sadly my donor passed away suddenly due to a stroke, around April 20, 2015. I happenned to be on the waiting list for a heart. Many things had to line up, and everything fell into place so that my life could be saved due to the heart that was able to be transplanted inside of me. If it wasn't me, it would be someone else. The donor didn't pass away for me, he would've anyway. 😔 I will always pray for my donor's family. I hope to someday hear from the family, but I understand that it's completely their prerogative. I will keep writing. I believe everything happens for the best. 💙♻️💚