Letters to donor families

[MooseMom]

I would be grateful for your thoughts/experiences/opinions/insights.

The day following my tx in June 2012, all of the tx patients on the floor were gathered together for lessons on various subjects, like labs, meds, etc.  The head of the donor family liaison department (I just made that name up; I'm not sure what it's called) spoke to us all about how important it was to send a letter to our respective donor families.

Within the month, I sent my letter via this department.  Several months passed before I received a reply (not that I expected one), and it was a truly lovely letter.  It was from the sister of my donor, and she included a beautiful photograph and a copy of a poem that she read at the funeral.  I was very touched and happy that she took the time to write to me, and several weeks later, I wrote a short reply.

I have met the man who received the other kidney, and he, too, had written a letter and had also received a reply.  I don't know how many people received precious organs from this lovely woman.

In November of that year, I sent a Thanksgiving card for obvious reasons. 

I sent a Christmas card.

Then early last year, I received a form from the hospital accompanied by a letter saying that my donor's sister had requested to correspond with me without having to go through the hospital.  I was happily surprised and gave my permission.

I've heard nothing since.  I let about six months go by before calling the hospital to make sure they had received my completed form.  They had, but they had not received any further information from my donor's sister. 

Still, I sent a Thanksgiving card and a Christmas card as I had done the year before.  I've heard nothing from the hospital to tell me not to continue sending cards, and I am assuming they forward them along as they've always done.

I don't know what to do this year.  If a donor's family member no longer wants to receive any correspondence from a recipient, do they inform the liaison office?  I don't want to offend her by ceasing to send cards, but I don't want to keep picking at scabs, either.  I don't want my cards to be a constant reminder of her loss.  What do you all do?  Does anyone have any advice for me?

Thank you!

(I know I could call the head of the liaison office, but I believe she herself is a donor family member, and her perspective is understandably skewed.  And she can't speak for all donor family members, anyway.)

[cattlekid]

I would keep doing as you have been doing.  I went to the Organ Transplant Support meeting at Good Samaritan in Downers Grove this month and the meeting topic was about contacting donor families.  The new president of the OTS is a liver recipient and he shared the story of how he contacted the family of the woman who was his donor.  It was a really touching story as he is a lifelong Bears fan and she was from Chippewa Falls, Wisconsin and of course her family members are all Packers fans.  The story even got picked up by NBC Sports and was shown nationally during Football Night in America last year before the final Bears-Packers game of the season.

Anyhow, the general gist was that it is very important to reach out to your donor family.   I have been lax in doing so, mostly because for the first few months, I didn't have much to write.  Now that I am coming up on my year anniversary, I am going to sit down and write this letter and tell the donor family of everything I have been able to accomplish in the year since my transplant.   

I would maybe use 2014 as a guide.  If you send holiday cards this year and maybe something over the summer (holidays can be way busy and I know that I am terrible at correspondence during that time), and get nothing, I would probably stop. 

My other thought is that maybe holidays are tough times.  Maybe anniversary cards would be better?  This way, when the family is already thinking about their loss, they can be reminded and comforted with the good that they did by agreeing to the donation?  I end that sentence with a question mark because I have never lost someone very close to me so I don't know how I would take it to be reminded of the loss on a yearly basis even though there was some good that came from it.

[MooseMom]

Thanks for that, cattlekid.  I watched that final Bears-Packers game but must have missed the story you mentioned.  I would have loved to have seen it.

You know, I've thought about sending an anniversary card instead of holiday cards, but I have no way of knowing which would be more comforting and/or less painful.  I just made a considered choice based on very little information. 

BTW, my donor's sister is the last remaining survivor of her family.  Both of her parents are deceased, and so now is her sister.  I know she has some half-siblings, but I don't know how close they all are.  I don't know if she has anyone with whom she can share her sense of loss.  And I don't want to inadvertently make it all harder for her.

I think I'm overanalyzing this.  Perhaps I just have to trust that she will know my intentions are good and that if she wants no further reminder of her sister's death, she will contact the hospital and ask that all cards and letters be stopped.

Does the OTS have monthly meetings at Downers Grove?  Have you been before?  Do you plan to go regularly?