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

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@jodeej

@rosemarya @contentandwell this is something we will need to start in the coming weeks. We both want to write to the family, but know it's going to be tough to put into words how thankful we are for this previous gift. I like the idea of writing a letter and then going back and making changes over time. My husband says he would like to actually meet the family sometime; I'm not sure what I think about doing that. Either of us could change our minds. Thank you for this post!
Blessings,
JoDee

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I have taken part in the Annual Organ Donor Recognition Events in Kentucky where I live. I was invited as a recipient to be available to honor and to comfort and to talk to the donor families who had been touched by organ donation within that year.
I remember meeting a couple whose adult son had been a donor. They shared that they had received a letter from the person who had received his heart. And they told me how much that meant to them – that their son's life and his sudden death had a purpose. They were deeply touched at the expression of sympathy and about learning a little about the person who now lives as a result.
I sat with them throughout the ceremony and for refreshments. I shared my own story about my transplant experience, and about my difficulty writing to my donor. When I shared that I had received a letter from my donor's family, the wife said, "I never even thought of that."
Several months later, she tracked my down, and sent me a letter that expressed her thanks. She told me that by writing that response to the recipient, she now felt peace.

Has anyone else had any similar experience?

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@rosemarya Rosemary, you are a perfect person to take part in an event like this. You always are able to express things so well. I, up until now, had not heard of any events for transplant donors or recipients around here, but MGH is having their first later this month and we plan to attend. I hope it will be a success.
JK

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@contentandwell

@rosemarya Rosemary, you are a perfect person to take part in an event like this. You always are able to express things so well. I, up until now, had not heard of any events for transplant donors or recipients around here, but MGH is having their first later this month and we plan to attend. I hope it will be a success.
JK

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@contentandwell, Fabulous that you will be able to attend this event to honor donor families. It will be a beautiful and emotional experience.
I look forward to hearing about your experience.

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@rosemarya actually now that I think about it, I think it’s a gathering just for transplant recipients. It would be really great if donor families were invited also but from what I’ve seen from my surgeon, MGH protects the donor family zealously so they would probably hesitate to get us ALL together.
JK

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@jodeej

@rosemarya @contentandwell this is something we will need to start in the coming weeks. We both want to write to the family, but know it's going to be tough to put into words how thankful we are for this previous gift. I like the idea of writing a letter and then going back and making changes over time. My husband says he would like to actually meet the family sometime; I'm not sure what I think about doing that. Either of us could change our minds. Thank you for this post!
Blessings,
JoDee

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@rosemarya @contentandwell we attended the transplant family picnic at Mayo while we were there. It is for recipients and donors. I'm unsure if there were any families of deceased donors there, though.

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@jodeej

@rosemarya @contentandwell this is something we will need to start in the coming weeks. We both want to write to the family, but know it's going to be tough to put into words how thankful we are for this previous gift. I like the idea of writing a letter and then going back and making changes over time. My husband says he would like to actually meet the family sometime; I'm not sure what I think about doing that. Either of us could change our minds. Thank you for this post!
Blessings,
JoDee

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@jodeej I suppose it should be up to the donor family if they wanted to participate in something like that.
I honestly don’t know what I would feel if I was in that position.
JK

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@contentandwell @rosemary…for some reason I would want to know the recipient if I had to donate a loved ones organ. Maybe out of curiosity but also to know they are doing well and that it was what my loved one wanted.

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@contentandwell

@rosemarya actually now that I think about it, I think it’s a gathering just for transplant recipients. It would be really great if donor families were invited also but from what I’ve seen from my surgeon, MGH protects the donor family zealously so they would probably hesitate to get us ALL together.
JK

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@contentandwell, I guess it depends on whether it is held in an auditorium setting and open to all, or an invitation reception.
I have attended both kinds. I have been there on invitation to act as a greeter and hostess on the occasions that I was in attendance. You are right about protecting and respecting the privacy for the donor families.

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@gaylea1

@contentandwell @rosemary…for some reason I would want to know the recipient if I had to donate a loved ones organ. Maybe out of curiosity but also to know they are doing well and that it was what my loved one wanted.

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The confidentiality of both the donor and recipient are strictly adhered to.

My friend's granddaughter was killed in traffic accident some years ago. She shared with me that they received a letter from UNOS, or hospital or some official source, that told them which organs were used for transplant. I don't remember if she knew if the three organs went to boys or girls, or any information at all. So, her family knew that three children were blessed by her 'Little Angel'. She did get a letter from the family of the child who received granddaughter's heart.

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@gaylea1

@contentandwell @rosemary…for some reason I would want to know the recipient if I had to donate a loved ones organ. Maybe out of curiosity but also to know they are doing well and that it was what my loved one wanted.

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@gaylea1 thanks for the input. When I sent the letter to the donor’s family, I did tell them about myself and how well I was doing. I really do get sad, moreso now than before I received their response, whenever I think of the grief they must feel.
I was glad to hear from them, but it hit me harder than I ever anticipated.
JK

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