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Deceased donor question

ShelbycreatesTransplant Patient
August 30, 2022 in General

Hi everyone. I had some questions about contact with your anonymous donor family. I had my kidney transplant 4 years ago. It took me a little while to get the courage to write them (especially since it looked like my transplant might not take). But I did eventually write them within the first year. I sent it through the directions from my tranplant center, but I never heard back. I don't know if the family got it or didn't want to hear from me. (I completely understand everyone has their reasons if they don't want to hear from donors, and I don't expect them to want to if they don't). I've thought about writing more to them, but I didn't know if I can write more, especially if they don't even want it. Anyone have any insight on this?

And if not, what has been your experience with contact with your donor's family?

Thanks!!

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  • KDNYRNExpert
    Medical Professional

    Good evening Shelby, I would call your post transplant team and ask them to speak with the donor team. There are a few scenarios that could be playing out such as the donor told the team they don't want any contact or more likely the coordinator didn't get it or get the letter to the donor. OR maybe the donor got it and is having a difficult time writing back. Since I am a donor coordinator I would say get ahold of someone that works in transplant as we are so busy sometimes we stink and drop the ball ;)

    August 30, 2022

1 - 22 of 22 Other Answers

  • ShelbycreatesTransplant Patient

    @KDNYRN thank you so much for that advice! I wondered about if it had gotten lost or something. I just never heard. I had an envelope that I sent into a center and then I didn't know who to contact after that since I never heard back afterward. It sounds like I might be able to get more info by contacting my transplant team.

    August 30, 2022
  • MelsammTransplant Patient

    Hi,

    Definitely check w/the donor program. The donor program contacted me at 6. months and said that the donor family wanted to contact me, you can imagine the feelings/emotions that were going thru me.

    I received my first letter and to this day we keep in touch. I was feeling really down one day and I went to the mailbox and had a note from them. 😊

    The very first note they told me all about my donor his name is Andy he was 25 and helped eight lives. They said that the most important thing for them was to hear how well we r doing and that we”recipients” were so grateful to them.

    I hope you get some information that will help u to get some answers.

    August 31, 2022
  • PoisonRose21Transplant Patient

    I agree, if you already attempted to contact the donor family and haven't heard, then the Donor Team or the Social Worker on your team. My social worker didn't contact me hard at all unless it involved insurance and additional financial assistance. I don't think we have a Donor Team with my clinic. I may try contacting someone within the Transplant team at my clinic maybe there is another person who can help find out if I can contact them and what I can share.

    August 31, 2022
  • RogerTransplant Patient

    I wrote a letter to my donor family and never heard back. Although difficult to write at the time I wanted to believe they received it and did not wish to communicate back to me which I was fine with. Everything I put in the letter was heartfelt and I still felt the attachment.

    I am coming up on my two year birthday and I am going to write another letter and give it to my transplant team. Letting the donor family know how my life has been changed and the things I was able to do the last two years because of their gift. I also want them know that I send love to my “Donor Angel” everyday.

    August 31, 2022
  • MelsammTransplant Patient

    Amen, I to am reaching my 2yr. birthday and do the same.

    August 31, 2022
  • Denise_RTransplant Patient

    I wrote to my donor family every year on my transplant anniversary for three years. It didn't (and doesn't) matter to me if I hear back as everyone's adventure is different and to allow a donor family to make the call about reaching back out. I've checked with our OPO and they have received the letters. Personally, I want to extend them all the grace to reply when and if they choose. If they ever do choose to reach out - I would be thrilled to tell them just how grateful I am for their loved one and this precious gift of life.

    September 7, 2022
  • ShelbycreatesTransplant Patient

    This is so interesting to me because I was under the impression that you wrote them once and then had to wait to hear back from them in order to write more. I'm going to be contacting my center. I feel like I was overwhelmed with so much processing and healing after my surgery that this part was kind of an afterthought from my center. I still think of my donor every day and am so incredibly grateful for them and their family's choice.

    September 8, 2022
  • Denise_RTransplant Patient
    https://transplantlyfe.com/discussion/comment/4070#Comment_4070

    In our area - and I think this is national (US), we can write as often as we'd like, and the reply is always up to the donor family. Sometimes it takes a while for them to process all they need to in order to reach back out. We live our lives reflecting our gratitude for this amazing gift they've given us!

    September 8, 2022
  • AliEm14Expert
    Transplant Patient

    I'm 2 years out and don't know if i'd ever want to contact my donor family. They know who I am (they were told post transplant their loved ones liver went to a female in her twenties in Alberta) but I've never written any letters. I've kind of left it up to if they want to find me they can, and who knows if that will change in the future. There are a ton of emotions involved, for both sides I would imagine, and while I'm grateful I also don't feel like i owe them anything

    September 8, 2022
  • MelsammTransplant Patient

    Your situation is a lot different, here in the states, there is no announcement who gets the organ the only way we can give them our gratitude is them willing to contact us “recipient”.

    Yes u r correct about the emotional feelings I think that is why we want to contact them to let them know how very grateful we are for this second chance at life.💚

    September 8, 2022
  • Denise_RTransplant Patient
    https://transplantlyfe.com/discussion/comment/4073#Comment_4073

    Hey Ali,

    That's totally fine - and I think totally normal. Everyone's different in how or if they want to reach out to the donor family. I don't know that I will write any additional letters. They know how to reach me, if they'd like to (and frankly, I'm pretty findable), and I've processed enough internally that I don't need (don't think I ever did) them to reach back out to me. Live my life with gratitude!

    September 8, 2022
  • ShelbycreatesTransplant Patient

    @Denise_R thanks for the info! That is what I’m gathering now. It’s good to figure this out. I had such a complicated recovery that I wanted wait and write when I was sure that everything was going to be okay. I think I had this feeling that I didn’t want their family member’s organ to be “wasted” if it didn’t work for me—which is totally asinine now that I think of it. But at the time I was grieving so much that I felt like it was up to me to make them feel better about their decision to donate their loved one’s organs. Now I recognize that was never my part to play and they can think whatever they want to. It gets complicated when intense grief and gratitude are intermixed. 💕

    September 8, 2022
  • Denise_RTransplant Patient
    https://transplantlyfe.com/discussion/comment/4077#Comment_4077

    Oooh, Shelby, there's a hot button issue and you are absolutely right! It was never up to you to make them feel anything about their decision to donate. Nor did their loved one die so that you could live. You don't have that power. Your only job is to live gratefully for this gift you were given! Whether or not you choose to write and whether or not they choose to respond, that's your only mission - to live a gratefully as you can for this amazing second chance. Which although not perfect is still beautiful.

    September 9, 2022
  • MelsammTransplant Patient

    Hi,

    I never thought about it that way.Agree I will live my LIFE w/gratitude. Ty💚

    September 9, 2022
  • AliEm14Expert
    Transplant Patient
    https://transplantlyfe.com/discussion/comment/4080#Comment_4080

    One of my teachers said she aspires to live her life as a human thank you, and i love that. i aspire to do that as well

    September 12, 2022
  • MelsammTransplant Patient

    I would have to agree w/that😊 I really have appreciated all of these comments. Ty

    September 12, 2022
  • Sdey0522Expert
    Transplant Patient

    @Shelbycreates - in most cases (in the 🇺🇸), when it comes to the interaction with the donor families of deceased donors - the actual communication / correspondence is facilitated by the donor services team of the designated OPO (Organ Procurement Organization). So, even if one goes through staff at the transplant center/hospital staff, ultimately the OPO is responsible. The folks at the OPO (usually, donor services team) will gather the letters/correspondence (from recipients as well as from Donor families). In many instances, the donor family actually reaches out to the OPO to inquire about the recipient(s) involved as part of the donation.

    The OPO is also very particular about preserving /respecting the privacy of recipients as well as the donor families. Once they have the letters, they make sure the letters don't contain too much personal information, especially not any name/contact information.

    Once the letter is sent, either to the donor family [or to the recipient(s)] - the OPO is supposed to notify that letter was forwarded on.

    After that point, it could be a long wait for any sort of response. The donor family MAY reply back to the OPO staff and inform them that they would like to correspond with the recipient(s), or they may evenindicate they're not ready.

    Sometimes, there maybe multiple exchanges between the recipient(s) and donor family members - provided both parties have consented. Of course, some people are very lucky if both parties agree to meet up in person at some point!

    Through the OPO that was involved in the revovery of organs in my case, I did write to the donor family of the donor hero who made the Gift of Life (a wonderful ❤️) possible for me. I haven't heard back from the donor family yet, but I know they received my letter. I'm hopeful that someday I'll have the opportunity to express my gratitude and sympathies to the amazing family! #ForeverGrateful !

    I will continue to write. I try not to write on my Heartiversaries - understandably, that partilicular day may be a very sad and difficult day for the family (while it's an incredibly happy day for me as a recipient. I understand & respect the fact that it's completely their prerogative & choice to communicate/correspond with me.

    Best of luck to you! I hope you connect with your donor family.

    November 19, 2022
  • RobTransplant Patient

    I wrote anonymously to my family in hospital before I came home.

    Since coming home 11 months ago I have passionately advocated for changes to laws across Australia.


    I know if not for their selflessness and generosity at a time of unimaginable grief, I would be dead.

    Out of respect for my donor’s family and gratitude for my donor who passed, I have worked pro bono for organisations helping people on the Transplant Journey.

    I am open to and would welcome my donor’s family reaching out to me but have no desire to interrupt their lives.


    I hope the changes I have been able to impact already and will continue to drive, give my donor’s family comfort their decision truly made an impact.

    www.transplantadvocacy.com

    November 19, 2022
  • Sdey0522Expert
    Transplant Patient

    Hi Rob 👋🏽

    Thank you so much for sharing your perspective. What you're doing in Australia as far as advocacy for Organ Donation & Transplantation is amazing! Excellent initiative! I wish you the very best.

    Your voice counts and it will make a differrence. I appreciate you for everything you are doing.

    Ps. I hope you and your amazing Donor Family will be connected some day. 🙏

    November 21, 2022
  • MelsammTransplant Patient

    Yes, Rob thank you. I to hope u hear from your donor family it has been a blessing for me to be in contact w mine.

    November 21, 2022
  • RobTransplant Patient
    https://www.9news.com.au/videos/health/rates-of-organ-donation-falling-across-nsw/clano36cl00280qqh25vb54xj


    November 21, 2022
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