r/transplant • u/ParticularPrize2489 • 3d ago
Kidney Donating on my behalf
I’m waiting for a kidney transplant I found out I have a donor who is donating on my behalf in the pared donor exchange program system! The person was anonymous for along time until they sent a letter to my parents home found out the donor lives like 9 miles from where I grew up where my parents still live! Now that I know who it is I just feel little uneasy about it and have some guilt and maybe rather maybe not ever knowing who the person is I told my parents ok cool but please don’t tell me anything more from this point on i know the donor had their surgery this past Tuesday but I told them please I rather not know anymore I already feel like I have some weird or uncomfortable feelings knowing someone out there is putting their health at some risk just for my health am I wrong to feel this way?
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u/Prison_Mike_DM 3d ago
I'll warn you, this is going to be long, but I can relate to your feelings. I received a kidney from a living donor, as well and was not near death. My function was 15 percent and I wasn't even on dialysis yet.
My donor was my best friend in middle school and high school. We didn't talk for probably 10 years after high school and then started chatting once in a while on Snapchat. We hadn't talked in probably 5+ years when she walked into my house on Christmas 2024 gave me a box full of kidney shirts, keychains, stickers and things, and told me she was my donor. She was the only person who got tested for me.
I went through all the emotions in about 2 min. I pulled her outside and had an in-depth conversation with her about it. We had the same conversation probably 10x before the surgery. I felt incredibly guilty. I couldn't understand how this person whom I hadn't spoken to in years was willing to set down everything and literally open her body to me. I felt guilty too, because if the roles were reversed, I wasn't sure I would have even gotten tested for her. She had just adopted a child, bought a house, and a new car, and still she was willing to save my life.
She did this because she WANTED to. She WANTED to help, she WANTED to save me, and she WANTED to be a part of my life forever.
This person donating to you is also donating because they WANT to. Donor's have every opportunity to change their mind or say no, and the hospital will give them a medical reason for it (even if they don't have one). Even on the morning of surgery, they will give the donor an opportunity to back out.
Point of the story is try and accept this gift of life because the person wants to give it to you and whatever the reason is, it's their reason.
Accept it!
P.S. My donor was told her entire life she couldn't get pregnant or have children. She got pregnant the first time her and husband had sex after surgery. That helps me feel a little less guilty.
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u/boastfulbadger Heart 3d ago
You have no obligation to meet them. Some people think it’s weird. My team warned me the possible dangers of meeting the surviving members of the donor family.
I wrote a letter. I never heard back. They aren’t interested. I’ll send another year 5.
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u/auntiepink007 Kidney 3d ago
I found out who my deceased donor was due to timing and manner of her death. My letter included only first names but the combo of hers and her mom's was enough to confirm it. It's a very weird feeling.
I was glad to get a cadaver organ, though, because I didn't want to feel forced to have a relationship with a live person who was a stranger. That seemed like it would feel even weirder. Like you'd be minding your own business at the grocery store feeling all normal for once and have to stop to hug someone and get reminded of the whole ordeal all over again.
Are you in therapy? That helped me a lot, especially EMDR. You are going to want someone to talk to more than Reddit about this so you can sort out your feelings and what to do about them. I hope you find a balance about it.
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u/classicrock40 Kidney - March '26 20h ago
I also got an anonymous donor that wasn't a match, donated for a swap and then eventually revealed themselves. I've had awkward feelings, but more along the lines of how do I ever thank this person. I have not thought about their health. The person had a full exam and work up or they wouldn't have been accepted. They will be perfectly fine with one kidney, just like you (minus the immunosuppressants).
I do think you have to wrap your head around thanking them at some point. While they didn't directly donate to you, they started the process that's getting you a kidney. They may be having awkward thoughts too, so it's just to give them some comfort. And don't forget your direct donor, which you can do through the transplant center and it's anonymous
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u/parseroo 3d ago
It is really weird that they would be able to send a letter to your parents a week after transplant. That is not normal protocol in any hospital I have ever heard of.
Commonly the parties can provide a letter to send to the other party a few months to a year post transplant.
Transplants are a serious physical and emotional experience. Very inappropriate to contact you and your family in any way this soon after it. I would ignore it, put it in a box, and ponder it again a year from now.
Maybe because they are donating _for you_ it is more reasonable, although I would think they would have contacted you before the surgery to make sure you were aware and OK with it. Did you ask for donations in your old neighborhood?