Not dialysis related -writing letter to donor family

Hey guys,

It’s manisha remember me I had the transplant with atn (acute tubular necrosis)sleeping kidney. Well it did wake up and is working great so far.
Haven’t posted in a while but I have been lurking in the shadows reading your posts. Kinda feel like I don’t belong anymore. I guess that is a good thing …in a way.

I need some help- I have been trying to write a letter to the donor family for months. I start and stop and just cry for hours. (I never, ever cry) I cannot deal with just saying thank you. I feel like yeah getting a kidney is great for me but someone had to die for me to get it. I have asked others to help and everyone thinks that it should just be soooo easy to do, so I assumed since they don’t know what this is like I’d ask you guys.

What do you say to someone who amid great loss and despair thought enough of someone that they never even met to donate organs?

Please help this is taking me too long
If you want I can post what I have so far

thanks ,

Obviously I’ve never written a letter like this, Manisha. But from what I’ve learned from donor families, it makes them feel better to know that a part of their loved one lives on and is helping someone else to have a good life. So, you might start with, “I’m so sorry for your loss, I didn’t know your loved one, but am sure s/he was a wonderful person, or you and s/he wouldn’t have done such a wonderful thing as donate his/her kidney to a stranger.” And then you might tell them something about you and your life, what you do, how your kidney failure and dialysis affected you, and what your life is like now with the new kidney. This is probably at least a 2-3-4 page letter. It’s not quick. And then you can end by saying, something like, “I wish there were words to express how profoundly grateful I am that you and your loved one were willing to give such an amazing gift…”

Please keep in mind that this person died–and then donated organs. S/he did NOT die so you could have them, s/he DIED. The fact that something good could come out of that for someone else is a bonus. It’s not your fault that your donor died.

I know just how you feel. It took me about 6 months to write the first letter to my donors family. It was the hardest letter I have ever written and I also cried almost the whole time I wrote it.

I used the Lifesource guidelines in writing my letter. I thanked them and told them a bit about myself and the difference the new kidney had made in my life. I ended by acknowledging their loss and the gratefulnes I felt at their decision to donate organs.

I did get a return letter from my donors husband which I also cried about when reading. Organ donation and receiving is very emotional. I just sent off the 2nd letter a couple of weeks ago, as this is the time of our 1st anniversary and it was not quite as hard to write but still very emotional.

Best wishes with your new kidney and good luck with your letter.

I can only imagine how difficult it is to write such a letter, but believe the donor’s family would be very gratified to know how their loved one’s organ is helping another and how much you appreciate the fact that they helped with their involvement at a most very difficult time.

And Dori, if you’re ever looking for a part-time job, you may want to consider helping people with writing thank you letters. Your few scribblings were quite touching and I’m sure would make the donor’s family feel good, albeit about a difficult issue.

I would have said thank you had my donated kidney worked. Instead, I spent many months undergoing plasmapharesis. Eventually the kidney became infected and had to be removed. I told my UW social worker to please convey my gratitude to the donor family and explain that unforunately it didn’t work.

About a year later I got a letter from the wife of the donor wondering why I wasn’t more appreciative of her husband’s gift. As I read it while undergoing in-center dialysis I was saddened that I could not give her what she needed. I was also a little disappointed with my UW Transplant Social Worker.

But, say thank you and share with them some of the things you may now be doing that you were unable to do without the transplant.

Good luck. Erich