How to overcome grief over deceased donor after transplant?

@376ak2567, I'm so glad that @gingerw's post inspired you to make your first post in the Transplants group. I can imagine that you are grateful for the 17 years that your husband's donor gifted to your family. How are you doing today?

@shepn7, I have been reading the wide range of responses that your question provoked from fellow transplant recipients. I'm curious to know if this has helped reframed your feelings of guilt and helped to embrace life?

Thank you for asking. Since my husband’s death our son also received a heart transplant. I never thought I would have to go through this twice. Same heart problem passed down in the family. Son is doing fine, he is heading towards his fifth year. Both of the them wrote to their owners, but did not receive an answer. Son thinks that it has to be very difficult for the donor family to relive the loss again.
Lilo

Lilo, what is the genetic heart condition that both your husband and son had? (If you don't mind my asking.)

No I do not mind you asking. Both of them had idiopathic cardio myopathy. My husband’s was found after having problems and Andy’s was found during a regular check-up.

Hello,

It has helped tremendously hearing I'm not alone in feeling like this. But I feel this is still an issue I need to process and come to term with. I am very grateful and happy to be alive, but I'm still struggling when I think of the fact that my donor will never get to experience all these great things life has to offer. A lot of the comments suggested writing the donors family, which I think is a great idea. I just don't know if I'm ready to do that yet. There is too much tangled up in my head and heart surrounding this, and I'm not sure I could articulate my gratitude and condolences effectively. I'm working on finding outside resources to help with my feelings of grief, and have started attending a transplant support group over zoom that has been helpful. Overall, I think I still need to process, but knowing I'm not alone has been comforting.

I recently wrote a letter to my donor's family. It was a very difficult letter to write and it took me weeks and many drafts to finally feel that I had expressed my true feelings. As I was writing it, I thought I was feeling guilt that I live because their loved one did not, but as I examined my feelings more closely, I realized that in addition to gratitude for the gift of life, what I'm feeling is a deep sadness at the loss of life, not guilt.

Feelings that were difficult to articulate, but once I got them on paper and sent the letter, I felt a sense of peace in knowing I did the right thing for me, and hopefully them, by reaching out in sympathy and gratitude. I hope to hear back from them, but I'll understand if they don't respond and I'm okay with that.

@shepn7,

It is understandable that life events can trigger your emotions. Since my own organ transplant, I feel as if have become, overall, more sensitive to the world and the people around me. Talking with a trusted, no judgmental loved one helps. Talking with another person who had experience with their own serious health event helps. For me, that person was a special girlfriend who was on a cancer journey. She understood in a way that no one else did. My husband was at my side through out every part of my illness and transplant, but he did not like to revisit those painful time after I healed and resumed a normal life.

I want you to let go of the guilt about writing a letter. When you feel ready. If you feel ready, you can write a simple note in a nice card. My letter was only 5 sentences. (My condolences, My appreciation, How I will honor the donor, My future plans, My well wishes for the donor family).

Grieving is personal journey. There is not a right way or a wrong way.

How has your life changed since your transplant? What do you enjoy doing with your new life?

@colleenyoung I'm still struggling with grief over this subject. I purchased a necklace that says "to honor your gift of life" and wore it the entire month of June in honor of my donor and my transplant anniversary. Some days are better than others. I had to stop wearing it recently because it was making me too sad to think about. I can't seem to let this grief about my deceased donor go. I'd love to be able to say everyone suggestions changed my life and how I feel about things, but I'm not there yet. I hope someday I will be.

@shepn7 There is no timeline for grief of any kind. Please be gentle on yourself.

My husband is a deceased donor kidney recipient. We also felt tremendous grief for this young person to not be able to continue his life. Knowing my husband was given a second chance, we have tried to make sure it counts now, especially in honor and gratitude of his donor. We are very aware that his donor and family will not have the opportunity to experience events, and we honor the new life he has by doing more volunteering, helping others more, because he can now.

What outside resources, that you spoke about in May, did you find to help you process your grief issues?
Ginger