Writing to Your Donor's Family.

Posted by JK @contentandwell, Aug 2, 2018

Have any of you who have had a transplant, written to the donor's family and received a letter back, and have any of you met the family or set up a time to meet?

Prior to being discharged from the hospital following my transplant, I was encouraged to write to the donor’s family if and when it felt right. I believe this is typical of all transplant centers. The decision to write is a deeply personal one. Recipients are encouraged to wait a while because the initial grief can be so overwhelming for the donor's family.

The UNOS guidelines are these:
https://unos.org/donation/connecting-donors-and-recipients/
I waited three or four months before writing what I think was a very gracious letter, and heard back from the parents of the donor in April — a little more than a year after I had written I had wondered slightly about the donor, primarily the gender (I really did not want to be any more intrusive than that), but my transplant surgeon was reluctant to divulge even that. The letter I received from the parents gave much information, including their full names. I think my letter was well received by them, they sounded very pleased with it. Hearing the details of the donor was even more heart-wrenching than just knowing that a family somewhere was grieving their loss while I was celebrating my survival. I now feel a sense of mourning also. I can only imagine what they must be going through. A loss of a young adult child is something I don't think a person ever gets over. I think of them and pray for them daily.

I am still composing a letter back to them, trying to be very careful of exactly what I express. It never occurred to me that a letter from the donor family would make me so sad. I of course do not want to express that to them, just my empathy and compassion. I will not be surprised if at some point they want to meet. If so, that will be very difficult for me, I tend to get emotional.

I am very interested in hearing if others have received letters back, if they have met the donor's family, and if so how that went. It's obviously a very sensitive area.

Thanks. JK

Interested in more discussions like this? Go to the Transplants group.

@gaylea1

@jodeej I also sent a letter to my donor's family on my one year transplantversary . I havent heard back but I feel better knowing that I reached out to them and expressed my gratefulness.

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@gaylea1 so do we. I understand how difficult it must be for them. We know that it was a 50'ish year old woman that had a stroke. If she was married and had kids they were most likely still trying to find their new normal. I sometimes wonder if they even agreed to accept the letter.

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@funk8nguy

Who has contacted their donors family to thank them? Opinions
I received a lung Transplant in 2005 and felt bad I haven’t contacted my donors family to thank them. I didn’t have the right words to tell them thanks, I don’t know what I would even say now.
A bad time in their lives turned out to be a lifesaver for me. Is it too late?

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@funk8nguy I started my letter with condolences and heartfelt sorrow for their loss. I acknowledged the value of the life that was lost and that my life was saved and how grateful my kids, family and friends were.

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@jodeej

@gaylea1 so do we. I understand how difficult it must be for them. We know that it was a 50'ish year old woman that had a stroke. If she was married and had kids they were most likely still trying to find their new normal. I sometimes wonder if they even agreed to accept the letter.

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@jodeej I have no idea about my donor, the family or how she/he died. I hoped that I didn't upset anyone with my letter (if they even read it) but I kept it focused more on the donor than myself. I also didn't ramble about my own journey to the transplant but what I had to look forward to with the giift of life.

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@colleenyoung

Hi @funk8nguy. Great question. It's never too late for kindness.
You'll notice that I moved your message to this existing discussion called "Writing to Your Donor's Family." In addition to the replies you've aleady gotton from @rwalkie @corn50 and @jodeej, you can click VIEW & REPLY to review comments made from other members too.

Here's another discussion that people might be interested in too:
– Letter to donor family: I'm not sure how to start https://connect.mayoclinic.org/discussion/letter-to-donor-family/

@jodeej, you've come a long way! I think it'll be interesting for you to read your past comments.

Funk8nguy, in my opinion, it's never too late for kindness. If it's on your mind now, it's the right time.

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@funk8nguy It is never too late, and I'll wager recipients are grateful everyday. My husband received a kidney Oct 2016 and we often speak of his "present to be present". We crafted a letter and sent it through the channels, but never heard back. As others have mentioned, showing gratitude is timeless, and he focused on what he is now able to continue doing. While mourning the loss of a loved one, the gifting of a chance to live cannot be underplayed. Simple appreciation is heartfelt.
Ginger

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@gaylea1

@jodeej I have no idea about my donor, the family or how she/he died. I hoped that I didn't upset anyone with my letter (if they even read it) but I kept it focused more on the donor than myself. I also didn't ramble about my own journey to the transplant but what I had to look forward to with the giift of life.

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We asked the surgeon and that was all they could tell us, for obvious reasons. I kept our letter very general, too. We expressed sympathy and gratitude and told them a little about our life since.

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Here is a link for information from UNOS – United Network for Organ Sharing:
UNOS Transplant Living – Contacting my donor family: https://transplantliving.org/community/contacting-my-donor-family/

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@funk8nguy

Who has contacted their donors family to thank them? Opinions
I received a lung Transplant in 2005 and felt bad I haven’t contacted my donors family to thank them. I didn’t have the right words to tell them thanks, I don’t know what I would even say now.
A bad time in their lives turned out to be a lifesaver for me. Is it too late?

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@funk8nguy I don't think it's ever too late but I would not delay it further. When my donor's parent's responded to me they included their names and their daughter's name. The whole thing is a bit complicated, but I discovered that her mother passed away about two years after my donor did. I'm glad I wrote while she was still alive because she sounded truly grateful to hear from me.

It was the most difficult that I have ever written but just express what's in your heart. Their lives will never be the same so you are not going to make it worse by writing now, even though it is late.

Did your transplant center give you a packet with examples of what to write and guidelines? Mine did and it was very helpful.
JK

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I recently wrote a letter to my donor family and received back a letter from my Transplant Center Social Worker thanking me "for having the courage and taking the time to thank your donor family. I'm sure it will be greatly appreciated".

It went on to say "The most common message we hear from our donor families is what a difference receiving correspondence from recipients makes in their lives."

It was cathartic for me to write it and I'm so glad I did, but we're all different. It might not be something that feels right for you, or you just may not be ready. That's okay, because apparently the donor family aren't left guessing if their gift made a difference for anyone. I was told that my Transplant Center and most others give the donor family the option of knowing how many lives their loved one saved and a brief description of the person who received each organ.

I wasn't privy to this information of course, but I was curious and did an online search and came across such a letter to a donor family, unrelated to me that I thought I would share in case it helps anyone else who struggles with thanking the donor family.
https://www.goodthingsguy.com/people/organ-donation-letter/

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