Writing to Your Donor's Family.
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
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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.
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/
@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
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/
I had a liver transplant November 1, 1992. I was Mayo's 397th liver transplant! Back then we were encouraged to write also. We were told however that correspondence back from the donor family would not be forwarded to the recipient. Cross contact back then was against their protocol.
I can't believe how much it's changed, and for the better!
I wrote my donor family faithfully each year at or on the anniversary of their mother's passing. I learned my donor was a 48 year old woman from Waterloo Iowa. More information than usually given back then. She had died from an aneurysm and donated to 5 people.
In the late 90's I received a letter from the two daughters who were the last remaining members of the immediate family. It was slipped out of my file, into a nurses purse and sent to me privately... I cannot tell you how emotional it was to read a letter from the family who saved my life!
In 2000 Carolyn's (my donor) daughters requested an exchange of contact information. After receiving the letter from Lifesource addressed to me c/o Mayo, the equivalent of sending a letter to you via the nearest big city you live in, so it took a while to get to me. I called them immediately! I got a phone number to call, and called at least 6 different times before I actually waited for an answer!
We chatted for a number of times, and made plans to meet at their home in Iowa,
I live in Illinois, and spent my working life as a truck driver, so the 4 hour drive was nothing for me.
Labor Day Weekend 2000 we met for the first time!! There was such a sense of closure for my family knowing finally who the family was, spending time with them. We visited the family graves, broke bread at their mom's favorite restaurant, and created a life long bond of friendship and family. In November of 2023, my wife and I went back to Waterloo, and spent a few days with the one remaining daughter. The other had passed a few years ago. I love that woman like a sister, and she sees me as family. I am so glad I wrote that letter! All those letters!!
Being a gifted poet, I brought copies of what I had written to date, and when my book was published I made sure they both got copies!
So... if you're on the fence about writing your donor's family please do it! It's the least one can do for the greatest gift of a lifetime.
If you want or need help writing, I have many poems written that I can share and you can print and send along with a letter.
Many will not hear back from their donor families, but I know some will. None will if you don't write though!
Thank you!
Peace
Joe K.