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Keeping in Touch with Your Donor

ShelbycreatesTransplant Patient
April 4, 2022 in General

Hi everyone. I had a kidney transplant on July 6, 2018. I was in Michigan at the time and the donor was from California. I wrote my donor's family a note, but I've never heard back. So I have a question for those of you who had a deceased anonymous donor, did you ever reach out to the donor's family? If you did, did they respond back? Anyone keep in contact with theirs? Did you only write one letter or have you written multiple? I'd love to hear back or meet mine. I think it would be insanely interesting to find out more about the person who I have an organ in common with. Thanks!

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1 - 15 of 15 Replies

  • Porsche1990Transplant Patient

    I , through LifeShare, attempted to contact my donors family twice.

    No response. It has been awhile (years), so I am going to try again.

    April 4, 2022
  • Mizzvi19Other

    My husband wrote a letter to his donor family and never received a response. I also wrote a letter to my donor family and didn’t hear from them.

    For whatever their reasons were to not to respond, only they know. I don’t know what I would do if I were in their shoes and I have to respect their wishes. Maybe someday they’ll reach out to us.

    April 4, 2022
  • DebTransplant Patient

    I tried to reach my donors family but they never responded to my letters. I really wanted to thank them and learn more about their son. I thank them in my prayers every night and pray they find peace in knowing that part of him lives on.

    April 4, 2022
  • AliEm14Expert
    Transplant Patient

    I haven’t reached out to my donor family, and they haven’t tried to contact me. I know my transplant Center sent them info on me right after transplant (that their loved one’s liver had gone to a female in her mid twenties who was now doing fine). I don’t know how I feel about having that relationship yet

    April 4, 2022
  • Saveddonna55Transplant Patient

    I reached out to my donor family and never heard back but I can understand that they were grieving. It’s not that I wanted to hear more about their loved one but how much I appreciated their kindness to me and others that may have received an organ too. I was and still am grateful for my blessed life because my of them. I told them I would take the best care of myself and their loved one’s pancreas. I was sad that I never heard anything but had come to terms with it a long time ago.

    April 5, 2022
  • StephenCFTransplant Patient

    my donor family reached out to me, shortly after my transplant. i hope this isn't too complicated, but here goes.

    i received my transplant in march, 2011. one of my best friend's was waiting bedside before my transplant and also visited me post transplant. his little brother was at church retreat in Austin when i received the call for transplant. a few days during this church retreat, they performed an exercise around a fire telling everyone what they're thankful for, what they're hopeful for, etc. anyway, he said that was he was thankful for his friend (me) receiving a transplant.

    this caught the attention of a girl next to him, who revealed that her best friend had just passed away unexpectedly the day of my transplant and that also her friend was an organ donor. they started chatting about the coincidence and the girl reached out to the older sister of the deceased girl.

    the family of the deceased girl confirmed some details about her passing and then the mother took over. she did some sleuthing, asked the organ procurement team where her daughter's donated organs went to, and began to connect the dots. her daughter's lungs were retrieved from Austin and sent to San Antonio, the day of my transplant.

    the mother then reached to my friend's little brother, asking for more details about my transplant, basically the who/what/when. once she felt reasonably confident i was the person whose life was saved by her daughter, she asked my friend for any contact information. my friend , also doubling as a close family friend, provided my mother's email address to her.

    i was still in the hospital when the donor's mother emailed my mom, saying she was without a doubt sure I had received her daughter's lungs. how both alternately sad and happy she was about the connection. she described how her daughter, only 17 years old, had passed away. obviously my mom was a bit shocked and wanted to confirm with my transplant team before replying.

    once we received confirmation via a lot of winks and nods from both the transplant team and procurement team we reached back out to confirm.

    Angela is her name.

    Angela's father name is Stephen. My name is Stephen. And we share the same birthday.

    since then, i've been to her sister's wedding and the family and we still keep in touch. all in all, it took less than two weeks from my transplant to know who my donor was.

    April 5, 2022
  • LazeyKTransplant Patient

    My liver transplant was preformed in Sept 2018 after waiting only eight months for a donor.

    The policy of University of Alabama at Birmingham hospital was that the donor’s family must allow contact by the recipient and that permission was never given.

    Because of the short waiting period and my size, 6ft 2 inches and weight, I needed a liver from a large donor.

    I suspect the donor was a young person and had a car wreck or was shot.

    But I will never know and have been very upset that I will never be able to send my gratitude to the family that sacrifice their love one to save another life.

    April 5, 2022
  • Sdey0522Expert
    Transplant Patient

    Wow, @StephenCF !

    ... thank you so much for sharing. 👍

    Transplant recipients & donor families are always encouraged to communicate / go through the Organ Procurement Organization (OPO) involved. The Transplant Center usually provides the relevant OPO contact details of the donation to the donor family. OPO's are very careful about what details are shared/exchanged between the recipient and donor family - everyone's privacy is very much protected until all involved parties are comfortable to communicate.

    As a recipient, I have reached out to thank my donor hero & #amazing donor family, through my local OPO. Although I haven't heard back from them, I remain hopeful.

    I plan on continuing to write to the donor family. I advise people to continue to do so, and there's never a 'perfect time to write to express gratitude'. It's always going to be their prerogative to acknowledge and take things forward as far as meeting up etc.

    Forever #grateful for the ♻️ #giftoflife ✅️

    April 5, 2022
  • AliEm14Expert
    Transplant Patient

    Based on my size (I'm 5 feet) we assumed my donor was either a younger male or a small female. It also had in my medical records reconstructive surgery was done on my liver prior to it being transplanted into me, so we assume it was some kind of accident. Interesting for sure

    April 5, 2022
  • AliEm14Expert
    Transplant Patient

    That's so cool. I love when life works like that. My aunt's niece (other side, via marriage) passed away last year and was an organ donor, and just through my connection to the transplant world I'm pretty sure I knew where at least a few of her organs went.

    April 5, 2022
  • AnnMarieCare Partner

    This is so interesting to me. I have really thought about this. Thank you for sharing your experiences

    April 6, 2022
  • brookegurradExpert
    Transplant Patient

    HOT TAKE: meeting your donor family isn't for everyone


    I reached out to my OPO to contact my donor about 1-year post-transplant. I learned that the mom didn't want to communicate with donors, but she wanted us to know her son's name and age. He was 2 years older than me.

    Over the next few years, I learned that she lost her husband and her other son. It was heartbreaking for me.

    There is a sense of responsibility I feel to honor my donor and his family, but I don't want to cause them undue stress. An older friend of mine received a heart from a teenage donor, and when he wrote to the mom, they wanted to meet. They lived in the same town and knew some of the same people. At their first meeting she brought a stethoscope because she wanted to hear her son's heartbeat again.

    The 2 families got to be really close over the years. When my friend died, the donor mom said it felt like her son died all over again.

    This perspective helped me realize that I was ok with contact, but I didn't want to put a donor family through more heartbreak than necessary.

    It's a very personal choice, so I just wanted to offer a different perspective to consider.

    April 6, 2022
  • Sdey0522Expert
    Transplant Patient

    Thank you for sharing your perspective @brookegurrad

    April 6, 2022
  • Saveddonna55Transplant Patient

    Agree with you Brookegurrad. You never know what are others are going thru.

    April 6, 2022
  • DebTransplant Patient

    I’ve seen both sides as well my side being on the receiving side from a donor and wanting to know more about my donor. Then my very best friend being on the donor side. She lost her 25 year old son and after watching my struggles they decided to donate his organs. Unfortunately only his heart could be used for reasons unknown but she really wants to know who got his heart and all about them. So it’s tough on both sides so it’s definitely a mental strain on some.

    April 7, 2022
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