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Donor family letter.

Hi all, I hope you all are doing well! I'm 4 1/2 months post transplant and feeling great health wise, still haven't gotten my energy level back, but I'm pushing myself a bit more now that my liver and I are getting along so well!I'm writing in regard to my previous post, composing a letter to my donors family, you all gave me great advice, suggestions and opinions, thanks everyone for your help. I sent my letter and I heard back from the mom, dad and sister of my donor!! They want to meet me and I can't wait! I really felt a connection with the mom and dad because they lost their son and from what I could piece together he was my sons age, and he was dearly loved and deeply missed and I too am morning their loss with them even though it saved my life. A parent should never have to say good bye to their child and to know that I have him with me, keeping me alive every day I've become a fierce protector of my health and their sons generous gift that I will forever be grateful for! His sister misses her brother so much and her description of him reminded me of how my children love each other and how they love their different outlooks and qualities.The dad said he wanted to meet me to spend some time with his son, I know I can't give him that but I can tell him how his son has changed me and my life, and he really has, my appetite, likes and dislikes, and emotions are all new and I'm enjoying it so much. I talk to my donor everyday and have dubbed him my guardian angel, knowing he is with me makes me strong, confidant and rational! All traits I admire!If anyone else has a meet up they want to share I would love hearing about it! If you haven't written a letter, yet, think about it.Love, Jacquie

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Replies

  • Hi Jacque and Mark! Thank for sharing your wisdom regarding donor letters. I will speak with my transplant coordinator about it!
    Blessings, Nancy
  • I am so happy for all of you who have had the blessing of meeting with your donor's family. About eight months after my transplant, I wrote my donor family, thanking them for this special gift of life I was given because of their willingness and sacrifice of donating the organ of their loved one. I went on to let them know my hopes and dreams and that they were in my heartfelt thought and prayers.
    I have not heard from them and, who knows, I may not. Do you think it's proper to write a second letter? I'm not even sure if my hepatologist would allow it. Any advice is appreciated!
    • Nancy,

         I agree with Jacque.  Your hepatologist has absolutely nothing to do with your sending a letter to your donor family other than providing the information to do so.  Give it to your transplant coordinator nurse.  She will give it to the donor services agency that handles organ donations for your transplant hospital.  Then if there is a reply the reverse happens and you eventually get it back.  I'd send a letter once a year if nothing more than to thank them for the precious gift of life, give them an update of how you are doing, etc.  Make sure your doctor is not hindering the communication with your donor family.  It's not his decision to forbid you to do that.  UNOS has strict guidelines about communicating with donor families that he must follow.

      Here's a guide from UNOS that might help you.  https://www.unos.org/donation/connecting-donors-and-recipients/

      Mark
      Liver Transplant 2015

      Connecting donor families & recipients
      Sometimes donor families and recipients choose to contact one another. While the decision to share your experience is a personal choice, many donor f…
    • Hi Nancy, First I don't know why your Hepatologist would say no to your writing another letter, it really is more of a personal, rather than medical thing. Second, I most definitely would try again, maybe your donors loved ones weren't ready to deal with anything other than their grief. Time has passed and they might be ready and willing to meet the person, their loved one saved!
      Please let me know if I can help in any way, email me Tvparents@aol.com
      Jacquie
      • Thank you Jacque! You're a doll! I'll keep your email. Mine is faithn0803@gmail.com.
        Nancy
  • Hi Jacque, I sent a friend request, but no idea if it went or not. Congratulations on meeting your donor family! I've written but not heard back. I'm three years post liver transplant and also have new likes and dislikes and have wondered if anyone else experienced this too. If you would like to discuss this, please let me know. I'm very interested in learning more. Sincerely, Bex@bexhall.com
  • Hello everyone and thanks Jacque for the post.  Glad to know that you heard from your donor family and are planning a meet.  I can tell you first hand that it's one of the most rewarding experiences you will ever go through.  I thought I'd paste in what I posted on another forum about my donor family meeting below.  Just a little background first, I sent a letter to my donor family several months after transplant and never heard from them and wondered if I would.  Well about 10 months before my 1 year transplant anniversary I did hear back.  The donor was a 20 year old young man who tragically died as a result of an automobile incident.  At the time of the crash he was paralyzed and lay in the hospital for 3 or 4 days and finally had a massive stroke and was declared brain dead.  To cut the long story a bit short, here's the description of our meeting....

    Dear Friends,

    Yesterday was a special day for me and my family in two ways. Firstly yesterday 
    was the 1 year anniversary of my liver transplant 7-23-2015. I cannot 
    begin to express how grateful I am for this precious gift of life. I 
    rejoice today because of God's great grace and mercy upon my undeserving
    life. Secondly, I met my donor family. It was quite an 
    emotional meeting for us all. As soon as I came into the room I headed 
    over to my donors mother and we just both wept and wept. This was the 
    very first time we met or had any communication outside the very 
    anonymous letter we both exchanged. There weren't adequate words at 
    that moment to express how grateful we were for this precious gift, 
    while at the same time we mourned for their loss. Such a young man. He
    was 20 years old at the time of his tragic death in an automobile accident he 
    was a passenger in.

    I have attached a couple of photos. One is me with the donor family and
    the other also includes those of my family who were able to be there 
    today. My wife, youngest daughter and my parents. We will never forget this day nor this family and their dear late son Markeith.

    Mark

    Liver Transplant 7-23-2015

    undefined

    undefined

    • Hi Mark, Thanks so much for sharing your life and your donor family meet up story, It was so helpful with some of the apprehensions I've been having about my own meet up. I was really worried about the meet up being too soon because their loss and grief are so fresh and I wouldn't do anything to add further pain to their lives by meeting me .Im also worried about meeting them and then possibly rejecting the liver, that would not only be devastating to me and my family, but with meeting them, it would affect them also!!

      Your wonderful story put a very positive outlook on the whole event and it made me even more excited about meeting them. I have prayed long and constant and God has already blessed me with this miracle, I just know He wouldn't let me doing anything to hinder another's journey through mourning. I mourn with them and I hope by meeting me they can possibly find some peace knowing their loved one brought the gift of life to many people.

      I hope I'll be writing a story such as yours soon!

      Thanks again for sharing!

      Jacquie

  • Tomorrow afternoon I am going to the wedding of my heart donor's granddaughter.
    • That is so amazing and wonderful! For both of you to share this special day together is a true blessing! I just know you'll have an amazing day
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