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

@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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@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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@rosemarya. I suspect that this is sort of like a “social”, there are some refreshments served. I am curious and looking forward to attending.
JK

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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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@rosemary Our correspondence goes through "New England Donor Services". I expect that different regions do have different organizations coordinating the correspondence, and that the guidelines are very much the same.
I would imagine that more organs are used from adult donors, there are fewer children needing organs.
It really is such a miracle that they are able to do this, how fortunate we are to be living in these times. I really do hope that the country, or more and more states, choose to make the decision on organ donation an "opt out" one. I just feel so certain that the majority of people who have not gotten listed do not because they just don't think it applies to them, or they don't through procrastination.
Another area where donors are needed is bone marrow. I understand that is a bit painful for the donor but worthwhile. I have friends who have signed up for that also.
JK

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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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@contentedandwell – yes, sure hoping the "opt out" idea is put in place, like we have heard it is in other countries. I have been listed as a donor on my driver's license for many decades. My husband has been also, and never thought he would be needing an organ. The advancements continue in organ transplant surgery, hooray!

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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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@gingerw Hooray is right. When I was first listed, what I read made it sound as if live donors were at more risk than I have read they are now so hopefully that will encourage more people to be living donors also. Back then I even read that some insurance plans drop people if they have been an organ donor!
JK

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