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JK, Volunteer Mentor
@contentandwell

Posts: 1931
Joined: Feb 18, 2017

Writing to Your Donor's Family.

Posted by @contentandwell, Thu, Aug 2 7:50am

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

REPLY

This family must be truly remarkable. In the shock and grief of their loss they were still able to make the decision to help others, how beautiful is that! I imagine they and their loved one who passed away would want you to be happy, healthy and do good things with your life. Hopefully their is some comfort for them knowing that by donating this precious gift to you there is a little less pain and suffering in the world.

I wrote a letter to my donor family, too. I was not ready to do it until about 4-5 months after my transplant. I waited until I was recovered enough that I felt the physical and the emotional strength to put pen to paper.

For me it was extremely difficult to do. Like you, I was grieving for a family that I didn't know. But at the same time, I knew my donor in a most intimate way because now he/she is a living part of me. Many people think I am crazy and tell me that I shouldn't to feel that way. (I wonder if anyone else feels this way?)

There are no words that exist to say I'm sorry and thank you at the same time. I plodded through and after many rewrites, I came up with a letter that was satisfactory to me. I didn't even mail it right away, but waited a few days to be sure that it was just right to express my feelings. I felt a real sense of peace when I finally put the envelope in the mail box.

A few months later, I got a call from my transplant department and was asked if I would like them to forward a letter from my donor family to me. I never expected that to happen! But I secretly hoped that it might because maybe it would give me some closure to the guilt that I felt. When the mail man handed the letter to me, I had to sit down and to hold it for a few minutes before I was ready to open it. My hands were shaking and my tears were dripping on the envelope.

In that letter, I learned that my handwritten note, containing my condolences and my thanks, was well received. My donor family expressed appreciation that I contacted them. They told me a little about my donor. And then told me that they wanted me to enjoy my life. Which I do!

I did send a note on once as an update, but that is the end of any correspondence.

@rosemarya

I wrote a letter to my donor family, too. I was not ready to do it until about 4-5 months after my transplant. I waited until I was recovered enough that I felt the physical and the emotional strength to put pen to paper.

For me it was extremely difficult to do. Like you, I was grieving for a family that I didn't know. But at the same time, I knew my donor in a most intimate way because now he/she is a living part of me. Many people think I am crazy and tell me that I shouldn't to feel that way. (I wonder if anyone else feels this way?)

There are no words that exist to say I'm sorry and thank you at the same time. I plodded through and after many rewrites, I came up with a letter that was satisfactory to me. I didn't even mail it right away, but waited a few days to be sure that it was just right to express my feelings. I felt a real sense of peace when I finally put the envelope in the mail box.

A few months later, I got a call from my transplant department and was asked if I would like them to forward a letter from my donor family to me. I never expected that to happen! But I secretly hoped that it might because maybe it would give me some closure to the guilt that I felt. When the mail man handed the letter to me, I had to sit down and to hold it for a few minutes before I was ready to open it. My hands were shaking and my tears were dripping on the envelope.

In that letter, I learned that my handwritten note, containing my condolences and my thanks, was well received. My donor family expressed appreciation that I contacted them. They told me a little about my donor. And then told me that they wanted me to enjoy my life. Which I do!

I did send a note on once as an update, but that is the end of any correspondence.

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@rosemarya I too wrote and kept reviewing for a few days, making tweaks. It was the most difficult thing I ever had to write but I felt it was important.
I have been composing a return letter, basically an update also, and again I have written it and reviewed it numerous times.
A life too young was extinguished. I can only imagine how I would feel if it was my own son or daughter. It hurts my heart to even think about it. I pray every day that they have the strength to deal as well as possible with this. Even writing this has put tears in my eyes.
JK

@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

@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 was given given a very good guideline for writing it, if you don’t have one I would be glad to scan it in and attach it.
As I mentioned, the person at the hospital did indicate that it is often best to wait a little while.
Also as I mentioned, I am afraid I would be too overwhelmed with emotion if I met the donor family, but I know many people do. Of course more than likely there were many families who also were given a new chance to live thanks to the donor and that person’s family.
JK

@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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@contentandwell the social worker at Mayo gave us a packet of information that included a pamphlet on what to write. We are possibly going to wait a few weeks yet to write. It's such an emotional letter.
Thank you,
JoDee

@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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My husband had his kidney transplant on 1 October 2016. He waited until his one year anniversary to write a thank you letter. His transplant surgeon at Scripps Green Institute in La Jolla [CA] was pleased with what he wrote. We have not heard back and may never, which disappoints him. We have decided to have a window decal made to thank his donor, along the lines of the ones you see that say "in loving memory of…", so we can honor again the gift of this kidney. By the way, we named the kidney "Kermit", which is an Irish name meaning "free man", as he is now free of dialysis.

@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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@gingerw I love the name! I didn’t choose a name for my liver based on anything other than wanting it to be gender-neutral, so I named it “Hank”.
I hope your husband does eventually hear back but if not it’s probably too painful for the donor’s family.
JK

@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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@contentandwell – well, my husband will tell you I always name things, from cars to sewing machines! So, it seemed right to name his new kidney. We do know the donor was male.

@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 you may want to wait even longer than a few weeks. The grief is still so fresh now. I can’t even think how difficult this must be, particularly if the death was unexpected.
JK

Liked by jodeej, gingerw

@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?

@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

@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.

Liked by jodeej

@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

Liked by jodeej

@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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