How to overcome grief over deceased donor after transplant?

Because we were sick prior to our transplant, went through major surgery, hospital stay, recovery, and may still be sick due to other health issues, we are traumatized. And, many of us continue to be traumatized for years. And, yes we have on top of this, guilt for our donor’s death and loss to their family while we have been given a “second life.”

Plus, we hear regularly from our family, friends, associates (who are well-meaning, of course), that we’re a miracle and blessed. Due to the trauma on our bodies, minds, and hearts many of us remain more emotional than we use to be. I, for one, was never a “crier,” but I sure am now. And, I find myself particularly emotional when I discuss my transplant.

Every morning I rise, I remember and am thankful for my donor, his family, and all donors. I know I did not cause his death, so I try to just think positive about the life his giving heart gave me. It is a struggle to move forward sometimes, I had to resign my job when I got sick and hospitalized for my transplant. And, I remain unemployed. I get annoyed sometimes about being told I’m a miracle. I do have guilt for my donor, his family, and the toll I took upon my supporters who sacrificed so much for me. And, with Covid and continued isolation even after being vaccinated, it seems hard to find my place in our society.

I do try to honor all the people who have given me my second chance, including my liver transplant team, by eating well, exercising, and being the best person I can be. This helps me to remain positive.

If you haven’t seen this video, I found it insightful when I was recovering from my surgery last fall - https://www.ted.com/talks/suleika_jaouad_what_almost_dying_taught_me_about_living

While it may feel like you are alone in your feelings of guilt, you are not. And, it’s okay and normal to have these feelings. But with the added stress in your life now, perhaps talk with your transplant team social worker. I’ve found mine to be very insightful.

Best wishes!

@shepn7, Welcome to Mayo Connect. I am happy that you have presented this topic about recipient guilt. I find that most people tell me to 'get over it' when I mention my grief and sorrow for a life lost and me receiving a new life.

I have experienced the guilt that you describe. Last week I had my 12th anniversary of my liver and kidney transplant. I find that each year during the days surrounding my own transplant date, that I become more aware and reflective than any other time of the year. I used to break into tears whenever I thought of my donor and family. I have also spent time thinking about the things that my donor's family will never experience, but I also have learned to think of my donor during some of my "1st time with new organs events" that he is enjoying them with me. That makes me happy, even though I might be shedding tears.

I found some peace by writing a letter to my donor's family. It was the most difficult thing that I ever tried to put into word. Have you written a letter to your donor family?

I want to share an article about my experience with donor guilt.

How absolutely precious! Your words so aptly express the overwhelming emotions of many of us! Thank you, thank you!

Thank you Rosemary for sharing this. I’ve been putting off writing my donor’s family because of the very dilemma you articulated so well. I finally started it this month as I felt motivated by National Donor Month and doing a fundraising page for New England Donor Services. Your experience has inspired me. While I know I may not hear from my donor ‘s family, I do know it is the right thing to do.

@shepn7 You voice a concern that many transplant recipients and their families have. My husband received a deceased donor kidney Oct 2016. Previous, both of his adult children had offered to be tested as a living donor, but failed to follow through.

His recovery was uneventful, and his life-saving kidney, whom he named Kermit ["free man" in Gaelic, free from dialysis], continues to be a life-gift. He chose to write a letter to his donor's family. An organ donor chooses this path before death, and knows the gift they offer to someone else. By acknowledging the family's grief, and honoring the gift, he has completed the circle started by the donor. As he explained, he is now able to continue his love of volunteer work, of seeing his grandchildren grow up, and making a difference. He shares his story, his journey, often. Each 1 October, we honor the gift from his donor.

He has not heard from the donor family, and that is okay. He is grateful every day.
Ginger

Dear Ginger,
My husband was a heart transplant and lived for almost 17 years. He very much felt like your husband is doing. Thankful for the extra years with us his family and able to enjoy his hobbies. He always told me that person did not need his heart anymore and he was so thankful to receive it. It was an incredible gift, a sad day for the donor family but a joyful day for us.
Lilo

I cannot say I understand your feelings but I will acknowledge their reality. I hope you can move beyond them. I received a heart transplant 16 months ago and from the day I made "the list" I resolved to live with gratitude to my eventual donor and his family and to intentionally reject guilt. Gratitude forced me to be external while guilt was a decidedly self-focused/internal feeling. Gratitude would make me move forward and guilt would just hold me back.

Now I did have tinges of guilt in that I felt my condition was letting so many people in my life down. But I quickly realized that they were now returning old favors and I heard things from people that are normally reserved for eulogies. So once again guilt did not help me move forward or build relationships.

And like you I am intently aware that my donor will never fulfill his dreams. To that end I have written two letters to his family (no answer yet) but plan to continue to do so every six months. As I have told them, I am not looking for a relationship but I want to know more about their son so that I can fulfill some of his dreams. If he wanted to go to Rome then I will go to Rome. When we arrive I will hold my hand over my heart and say, "We are here, Dave!" Because from the day I got the heart he and I go together as one. And yes I have named my heart and will rename it should I ever learn more about my donor.

For me the writing (letters and a long overdue book) has been cathartic and I encourage you to get your feelings down on paper. That can help in resolving internal conflicts.

Lastly, not a day goes by without me thanking my donor. When I complete a long hike in the Tortolitas or step off the elliptical trainer -- things I could not do before the transplant -- I pat my side (Dave has shifted down and left) and say, "Thanks Dave!" You would be surprised after all this time, a tear often comes to my eye. I know it is a tear of gratitude.
Best always,
s!
Scott Jensen

It would be helpful to see comments from donor's families to learn their reactions to hearing from organ recipients. How does such contact make them feel? How often would they prefer? Once? Occasionally? Annually? And any other insights they might share could be useful.

@deanna2, Welcome to the transplant discussion group. I am a recipient, and am not qualified to speak from the donor's family perspective. However, I do have a personal experience that I will share.

I used to volunteer with my regional organ donor affiliate group. And I was fortunate to be on the welcoming team for several donor recognition events. On one particular event, I met a couple who were grieving their son who had been an organ donor at the time of his death. They were happy that they had received a letter from one of his recipients. I shared my experience - the guilt, the grief, the letter from the donor mom and my reaction (as I shared in my previous post/article). She said she (donor mom) never even knew that she could write a letter to the recipient. Weeks later, I got a letter from her husband (he had tracked me down via the donor affiliate group). He told me that she found peace in writing to the recipient, and he thanked me for giving her the idea.

I think that many people have a difficult time to put things into words on paper. For me, a letter to my donor family was difficult to write. I wanted it short and to the point. I wanted to express sorrow for their loss and gratitude for the gift. Not an easy task for me as a recipient, and even more difficult for a grieving donor family member.

Deanna, Are you a recipient or a donor family member? What would be your preferences to send/receive a letter?

You can read what some other members have shared in the transplant discussion:
Writing to Your Donor's Family.
https://connect.mayoclinic.org/discussion/writing-to-your-donors-family/