Writing to Your Donor's Family.

Posted by JK, alumni mentor @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

@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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Hello. I received my transplant in November 2017. After the four month period dictated by the organization, I got a nice card and started a letter. I rewrote/restarted quite a few times. I got it back through the proper channels. It was edited and deemed perfect, except included were two photos – one of our family on Easter showing all of us with matching tee shirts with the caption “Team xxx(my nickname), the back saying “Team xxx(the hospital where the transplant took place) and the title caption “Miracles do happen”. The one on the back could not be sent. Through a quirk, my donor parents had it on their table, their daughter had seen the card and noted she had seen the photo some where else. Our eldest daughter had posted on a business twitter. The donor’s sister contacted our daughter at 5 one morning and our daughter called us. What nervous energy that call created! Do I contact them, do I want to contact them? I spoke with my nurse coordinator. She said this happenstance occurrence was indeed rare, but I was “the driver in charge” from that point. Long story, we met and it was extremely helpful to the father, for it had been a suicide. They came to our Gift of Life celebration and found it extremely helpful and that celebration was 22 months post. We are not close and our paths would never has crossed otherwise, but what a connection! I think of them, their son and their loss daily and thank God for their selfless generosity. My advise to you – do it! They may or may not want to hear from you. Start your note with the last sentence from your post. Good luck! Aren’t we in a fortunate club?

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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?

Jump to this post

My husband received his liver July 7, 2018. We sent a letter on his one year "transplantversary". We have never gotten a reply and I don't know what we would do if we did.

In my opinion, I say send a letter. It's never to late to say thank you. I'm sure they will appreciate the fact that you are still so thankful for the wonderful gift you received.

Blessings,
JoDee

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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?

REPLY
@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?

Jump to this post

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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@jodeej

My husband received his liver July 7, 2018. We sent a letter on his one year "transplantversary". We have never gotten a reply and I don't know what we would do if we did.

In my opinion, I say send a letter. It's never to late to say thank you. I'm sure they will appreciate the fact that you are still so thankful for the wonderful gift you received.

Blessings,
JoDee

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@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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Good that you feel better. My donor family wanted to hear from their son’s recipients, especially his heart. Mine was the only note they received. But some families want no communication/connection. I think when they attended the Gift of Life, they realized what a gift they had provided, whether it was my liver, another’s kidney, heart, etc. they attended the recipients’ celebration with our family.

81F66854-8C1B-4713-B4E7-A58F2C4E7F3B

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@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?

Jump to this post

@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?

Jump to this post

@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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