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

I have reached out to my donor family and have not heard back from them yet. I think about, and pray for, my donor and family everyday. My heart/liver transplant was on 7/4/2017. I wrote my letter to the donor family in February 2018. My physical health is great, I just need to learn to deal with the mental aspect.

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@chetfreeman

I have reached out to my donor family and have not heard back from them yet. I think about, and pray for, my donor and family everyday. My heart/liver transplant was on 7/4/2017. I wrote my letter to the donor family in February 2018. My physical health is great, I just need to learn to deal with the mental aspect.

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Count your blessing you are in good health. It may be to painful for the donar family to handle the list of a loved one.

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@chetfreeman

I have reached out to my donor family and have not heard back from them yet. I think about, and pray for, my donor and family everyday. My heart/liver transplant was on 7/4/2017. I wrote my letter to the donor family in February 2018. My physical health is great, I just need to learn to deal with the mental aspect.

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Welcome to Connect, @chetfreeman. Good for you for writing to your donor's family. I think the gratitude that recipients feel can only truly be understood by recipients themselves. I am not a transplant recipient so I can only try to understand how you must grapple with the emotional and mental side of receiving life at the loss of another. Several transplant recipient members have written about this on Connect. I think it was @contentandwell and/or @rosemarya who shared about this either here or in another discussion.

I applaud that you respect the gift of life and enjoy good physical health and strive to receive the gift graciously with mental wellbeing as well. I assume that it's a process.

Like @wwndy said, it may still be too painful for the family to write back to you. Perhaps they need more time. @contentandwell waited for over a year for a response. Maybe they'll never be able to write, but that doesn't mean that your letter wasn't appreciated. I bet they cherish the thought that their loved one gave life. I encourage to read @dawn_giacabazi's story about how giving the gift of life in time of sudden and unimaginable tragedy was a source of solace for her and her family.

* Living Without You – My Brother's Gift of Life https://connect.mayoclinic.org/discussion/living-without-you/

Chet, what part of the mental aspect do you struggle with the most?

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@colleenyoung

Welcome to Connect, @chetfreeman. Good for you for writing to your donor's family. I think the gratitude that recipients feel can only truly be understood by recipients themselves. I am not a transplant recipient so I can only try to understand how you must grapple with the emotional and mental side of receiving life at the loss of another. Several transplant recipient members have written about this on Connect. I think it was @contentandwell and/or @rosemarya who shared about this either here or in another discussion.

I applaud that you respect the gift of life and enjoy good physical health and strive to receive the gift graciously with mental wellbeing as well. I assume that it's a process.

Like @wwndy said, it may still be too painful for the family to write back to you. Perhaps they need more time. @contentandwell waited for over a year for a response. Maybe they'll never be able to write, but that doesn't mean that your letter wasn't appreciated. I bet they cherish the thought that their loved one gave life. I encourage to read @dawn_giacabazi's story about how giving the gift of life in time of sudden and unimaginable tragedy was a source of solace for her and her family.

* Living Without You – My Brother's Gift of Life https://connect.mayoclinic.org/discussion/living-without-you/

Chet, what part of the mental aspect do you struggle with the most?

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@colleenyoung @chetfreeman Congratulations on your gift of life. I know that receiving such a gift is can be overwhelming not only for the recipient, but for the donors. It changes the lives of everyone involved. Thinking of how they make such a gracious decision in the time of grief has never failed to humble me. My husband received his kidney October 1, 2016. Like you, he has written a letter to the donor's family, but we have not heard back. We understand that we may never hear from them, but we are comforted in the fact that we did reach out to express our gratitude. That's all we can do. A response from them would be wonderful, but we also understand that they may not be ready (now or ever) to share with us. We try to honor the gift given to us by charity work that we do, knowing that without the transplant he would not be able to do this now.
Ginger

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@colleenyoung

Welcome to Connect, @chetfreeman. Good for you for writing to your donor's family. I think the gratitude that recipients feel can only truly be understood by recipients themselves. I am not a transplant recipient so I can only try to understand how you must grapple with the emotional and mental side of receiving life at the loss of another. Several transplant recipient members have written about this on Connect. I think it was @contentandwell and/or @rosemarya who shared about this either here or in another discussion.

I applaud that you respect the gift of life and enjoy good physical health and strive to receive the gift graciously with mental wellbeing as well. I assume that it's a process.

Like @wwndy said, it may still be too painful for the family to write back to you. Perhaps they need more time. @contentandwell waited for over a year for a response. Maybe they'll never be able to write, but that doesn't mean that your letter wasn't appreciated. I bet they cherish the thought that their loved one gave life. I encourage to read @dawn_giacabazi's story about how giving the gift of life in time of sudden and unimaginable tragedy was a source of solace for her and her family.

* Living Without You – My Brother's Gift of Life https://connect.mayoclinic.org/discussion/living-without-you/

Chet, what part of the mental aspect do you struggle with the most?

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Thank you Colleen for your kind words.

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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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I received my transplant in 2016, I'm so grateful that they made the difficult decision to donate their family members organs that I wasn and still become overwhelmed with emotion. So I wrote the family ( 6 months after )to thank them for their sacrifice so that I could be granted a new life at 66 years old I wanted to live so I could continue to celebrate life with my spouse and grandchildren. Since my transplant We have celebrated two more grandchildren being born. I'm so grateful 🙏

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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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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?

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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

REPLY

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?

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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.

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