General
A new take on honouring your donor
We've had a million discussions about honouring your donor - those who've chosen to contact their donor families and those of us who haven't - but we discussed a really important angle of this last night in support groups that I want to bring up.
If you're someone who had a deceased donor transplant, how do you live with such an intimate knowledge of death? It sounds really dark to think of, and I know we all want to be positive, but grief is also a huge part of this journey. There are two sides to every story, and as much as we all love our donor families and are thankful for their selfless decisions they also are dealing with the loss of a loved one.
Is this something other people think about and how do you make sense of it?
I keep thinking of @Kouimet 's story of how they wished for good things to happen to her child's donor before they ever received word they were matched for a transplant. The way they focused on the donor's life as well as the donor's death. I tend to do that as well, and I'm always very aware that there's grief and death on the other side of my story. My donor would have died with or without me, and I can only hope their family felt supported and cared for in their time of grief.
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@AliEm14 thank you. Its definitely a hard concept to wrap my head around how my son's only chance at living was as a result of someone dying. His first transplant was a combined liver and kidney from the same donor so it had to be a deceased donor. We are so blessed to have such an amazing connection with his first donors family. Its harder to describe our feelings around the connection with the recent donors. My youngest son needed a second kidney transplant, and my oldest needed a kidney only transplant, which they both received 24 hours apart from each other 2 years ago. Both received their kidneys from different deceased donors and we have very little information about who they were and have not had the opportunity to meet any of the family members. We may never get that chance like we did with our first donor's family.
One thing that is very different this go around, is how our donor's died. Our first donor, Brandon, was 22 years old and died from a car accident. My son was 2 years old when he received the transplant so his whole life after that, Brandon was always part of the discussion and part of his life. He was a military veteran and we know him through his family.
However, with the transplants from two years ago, all we know is that my oldest received a kidney from a 21 year old male who passed away as a result of a brain aneurism and nothing else. The other transplant for my youngest son came from a man in his 30's who (we were told had challenges in his life which lead to substance abuse and incarceration. His cause of death was from suicide. That is information we have never shared with our children. We did not want to add any extra burden to them. Its not to say we will never discuss it with them, but we want to give it time. My husband and I both agree that it is very difficult to address and comprehend all the thoughts and emotions related to suicide and the painful battle this person must have endured, but he chose to be an organ donor and that is a heroic act that we will always honor. He is not defined by anything else. We will respect and honor his gift which helped our son continue to live.
Kouimet, My donor was 23 and did the same, his mom said he struggled with mental health issues a good part of his life. They tried so hard and she blames herself bc he came off his meds. I feel like you he is my hero for giving me the gift of life. 💚 so grateful I am in contact with them.
I hope that if we ever get to know our second donors family that we can help bring them peace knowing that life continues and the donor (the person) is honored. Thank you for sharing.
Same here, it does help, I wish you the best.
I’ve tried reaching out to my donors family but they have not responded. It’s hard to not know any history at all. All I know is a young male. I have a picture in my mind if what he may look like. It’s funny I want to know so badly and my best friend lost her son in a motorcycle wreck and she wants to know who received her sons heart, that's all they could use do the severity of the wreck, but the recipient doesn’t want any contact at all. Life net handled everything for the family all she would only relay was recipient was a male and he was doing fine. We both want to know more so badly it depresses us not to know. Maybe after hearing your stories it’s best I don’t know that knowledge might hurt even worse.
Transplant Patient
@Deb i find your friend’s story so interesting. I also have no desire to contact my donor family. I’ve said if they ever want to contact me, that’s fine but I don’t want to initiate contact. And this has received a lot of weird responses from people!
i really want to be so mindful of their grief. I will never be able to replace the loved one they lost. I live every day carrying the death of their person, and I hope I can honour them well. I have my own imaginings of who my donor was, as I’m sure they’ve imagined who I am, and I know so many people who knowing the reality of their situation made it so much harder emotionally. I do feel connected to them in a deep way and I have so much respect and empathy for their journey. I just don’t feel it would be overly beneficial right now for us to connect. But like I said, I left that door open and maybe one day I’ll feel differently. They do know the province I live in, and that I’m alive and doing well.
Yes, AliEm14, I think your situation is a little different bc your donor knows where you are, your donor knows you are doing well, if you both want to reach out to each other you can. Unfortunately I can understand where you are coming from Deb bc you have nothing , the unknown about the donor and they have a right not to be contacted but I know it must be so hard bc my donor family reached out to me. I hope you will get some peace.
I am not making sense of it. At the last forum I brought up my struggles with writing my thank you letter. I have at least 7 versions written yet none feel right. I feel that is not the right time and I have to believe I will know when that time comes. Untill then, I say thank you every day, think about my donor, he was a “he” if that means anything, in his 40’s in good health. I talk to him, I’ve named him Howard. My surgeons and caregivers think I am a nut case and now every time I am in the hospital, they ask me how Howard is doing.
Transplant Patient
@TheMac i love that! You do whatever you have to do to make sense of it. If writing the donor letter feels important to you, I’m sure the right words will come at the right time.
i always talk about being a human thank you. I live my life as a thanks and that’s enough for me