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Writing to my donor's loved ones

I received two liver transplants within 6 days of each other. At two months post-transplant, I have been thinking a lot about my donor and their family. What was their favorite food? What did they do for fun? What was their favorite color? And more personal things about them... What was their passion in life? Who did they love? What made them tick? When I think about what I want to say to my donor, about a gazillion and a half things pass through my head. The number one thing I think about is ' how in the world can I express those feelings on paper?' We as organ recipients have such a personal and deep connection with our donors; physically, emotionally, spiritually. This connection is indescribable to those who haven't undergone the incredible transplant experience, and what a precious experience!! I want to be able to express how truly and genuinely grateful I am to their loved one!!! I think most transplant recipients have gone through this sort of thing. I would love to hear stories of connecting with your donor. I know my first donor was very young and lived far away and my second I am not sure about but they were local. So, please comment some stories about letters you sent, tips about sending letters(because I am struggling writing that pure gratefulness on paper), or stories about contacting your donors family. Thank you!!!

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  • Hey Katie ...

      writing that letter for me was harder then going through the whole txplnt process ...  Trying to be thankful and grateful  to someone  for giving us the greatest gift  ever ...   and also trying to be as sympathetic as we can   if a loved one was lost  ..  keep writing  you will get the right words on paper ...

  • I'm confused. How could you get TWO livers in 6 days?? People have to wait long enough for just ONE organ.
    • I honestly have no idea. It was an incredible blessing straight from God, that's all I can say.
    • Neal,

        They probably had a rejection of the first organ.  If that be the case UNOS will bump them up to a Status 1 status due to immediate life threatening condition.  The organ allocation will then be a nationwide search for a match and they will get the next available one flown in to wherever the patient is.  This is one of the rare situations where Status 1 is used.

      Mark

      • That's the way my hospital explained it to me.

      • Status 1A!! That's what it was!! Although, I didn't reject my organ. I had a very bad blood clot in my bile duct and lung, which cut off all blood supply to my liver. And it was much too late for a resection. I had only a few days to live. I was so out of it, I have a hard time recalling what happened. Thank you.
  • I received double lung 6 years ago wrote my first letter at one year, wanted to write much sooner only problem was how do I say thank you for the gift of life I wrote and re- wrote 60-70 times before settling on my subject matter .

    Wrote saying that we ( donor) were doing very well , following all the rules, we traveled to Europe and had wonderful time. We attended two,weddings and that next year we would attend one of my grandchildren high school graduation 2 nod year wrote about our cruise and trips to Vegas and how again we followed rules. Two weeks later my wife and had greatest experience in many many years. We met Justin's family.

    Be patient,choose feelings and words that fit who you are and keep writing as I figured donor family would want to meet me if to tell me to leave them alone or because they felt like I was someone who appreciated the gift. Luckily it was the latter
  • Hello and congratulations!!!

    When I got my first transplant 11 years ago I had been on dialysis for 10 years. When I started dialysis I went through several periods where I removed myself from the transplant list because I could not bear the thought that there was someone walking around living their life whose death would save my life. It sounds silly, I know, but I really did go through that head space to finally arrive at the obvious outcome.

    When I got the call I was so overwhelmed with emotion knowing that, while my family celebrated, another family were mourning.

    It took me almost a year to write my letter to my donors family because, each time I sat down to write it, I could not do justice to what I felt.

    My advice to you is - don't rush it. Take your time and you will find a moment will arise unexpectedly that will allow your words to flow in a manner that will truly portray how you feel.

    I wish you the best life - and those feelings of wondering about your donor never leave. I quietly and publicly thank my donor continuously - particularly on the anniversary of the day I received it or even whenever I have moments of joy or sadness I will think of them and hold space for them and their family with love and gratitude. :-)
  • Katie - my husband received his heart transplant last March.  It was very hard for us to complete a thank you card to our donor's family.  Because of the privacy act, we were limited to what we could say.  Saying Thank You was not enough for us.  But, it was enough for our donor's family.  They were so grateful to receive our thank you card.  We then received a letter from them 2 months after the transplant.  We have kept in touch ever since.  This past Monday we finally got to meet face to face.  It was the most amazing experience ever.  For as grateful as we are to them and their family, they were just as grateful to us for keeping in touch with them. They miss their son but know that he still lives on in my husband. I know that not all recipients get to learn information about their donor or hear from their family, but we were truly blessed. 

    Good Luck with your letter to your donor.  I hope you get to learn all about them.  We found that my husband and his donor, our Special Angel, had many things in common. 

    Best Wishes,

    Krista French

  • Hi Everyone,

     I recently celebrated my one year transplant anniversary and had the privilege of meeting my donors family the very same day.  I had written to them about a month after transplant and never heard anything.  Then about a month and half ago the mother of the donor wrote me.  She apologized for waiting so long, but she and her husband had had triplets shortly after their sons death.  He was 20 years old and was declared brain dead as the result of injuries he sustained in an automobile incident.  He was riding in the back seat and a friend and the friends mother were in the front.  An argument started in the front and the friend jerked the steering wheel away from the mother sending the car into a tree. The donor was paraylzed for 4 days and then had a stroke and was declared brain dead.  His family agreed to donate his organs when they saw he had indicated that desire on his drivers license.  He was 20 years old and I was 51 at the time.  Words can hardly express the emotions we all went through when we met.  We had arranged with the donor agency to have them there in the conference room of the donor centers headquarters and then we would arrive after they were settled.  As soon as I walked through that door and saw the mother all I could do was rush over and hug and cry with her expressing our grief for their loss.  We had a precious time together learning more about this fine young man.  I've attached a photo of our meeting with the family. She stated several had sent cards of thanks and expressions of sympathy but that we were the only organ recipient that reached out with the hope of a meeting.  I will always remember that day and I hope to one day soon visit his grave to pay my respects.  You will never regret such a meeting if you have the opportunity.  Take care.

    Mark
    Liver Transplant 7-2015

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