Deceased Donor Question....

[RichardMEL]

A couple of comments.

First I would NOT be in favour of any kind of "requirement" to write a letter - I mean really?! Certainly this was never stressed to me by any transplant people I spoke to (on the team) and it was mentioned in a seminar I went to, but only in terms of "You can do this, but it has to be anonymous" and it was neevr really described as a "thank you" letter. I certainly never saw mine as a "thank you" letter - more a note to let the family know that good has come from the choice made at that terrible time and that I am at least one recipient who is doing well. I also wanted to express my condolences also (even though some could say it may seem a bit "fake" given I benefited from the loss - but as we all know we do not go into this WANTING someone to die for us). Feeling a requirement to write would just breed feelings of insincerity on both sides - like for those who may not want to they'd feel forced, and for the family how would they know the words were sincere? I do not know any stats on how many people actually do write - it may be lower than I imagine - but at least you know that if a recipient has made the choice and taken the time to write something, no matter how short, that it *is* sincere and the thought behind it is good.

As I wrote earlier I struggled for months trying to come up with something to express how profoundly this has changed my life for the better without making it potentially painful to read from their point of view given, whenever they got the letter, it would still hurt given the circumstances and I always try to be mindful of that sort of thing.

I really like the idea of a combined letter offering the two perspective. I would have done similar, but my cat isn't very good with a pen and a paw print with some happy drool probably would not help much!!!  I think this approach would give you both to say what you wanted and to express your feelings. Also I imagine Tony might feel better if words weren't written "for" him, but by him and certainly with his blessing.

[willowtreewren]

We are 16 months post transplant and I have found this thread very interesting. I wrote a letter to the donor family about a month post TX. We received a reply shortly afterward, in which the donor family expressed interest in meeting at some time.

Carl was not comfortable with that idea because the donor family's letter revealed that they are very religious and we are not. He was/is concerned that they would not like the idea that their son's kidney went to a non-believer (kind of like that criminal idea expressed earlier in this thread). So in my reply to them I never mentioned meeting. We have not heard from them since.

We were told that the kidney came from a man in his mid thirties who had committed suicide. We know from the correspondence that he was a divorced father of two young sons. We have exchanged first names. I did a Google search on our names and "kidney" and it brought me right here to IHD, so it seems that the donor family could find us if they really wanted to. I have wondered if they did so, and that is why they never responded to my second letter.

Our transplant center handled the letters.

Aleta

[MooseMom]

Aleta, I remember now that Carl was reluctant to meet with the donor family, and I now remember why, too.  I can understand the idea of being afraid of not "measuring up" to the ideal recipient that the donor family may have constructed.  I think I have had that little nugget of fear in the back of my mind, too, but had not really examined it.  What if I got a transplant and the donor family decided that maybe I'm too old for a tx (I'm 54) and that a younger person should have had it?  Or maybe they'd find some other reason to disapprove of me?  Oh, I'd be gutted!

Scmd, I understand that Tony is a "man of few words", but that doesn't mean that his few words can't be powerful.

[Chris]

When I volunteered for the NKF to speak at schools and at attendinging a organ transplant support group I was put off doing letters after I sent mine. In one corner the donor's family tries to, well "be up in your business" all the time and in the other corner where transplantees who made contact and met the donor families and tried to get to involved with the family and then get made when the family breaks off all contact probably out of fear and fear for their children(Hello McFly, get a clue! There must be a reason ). The less contact and knowledge about the donor suites me better. Years later I did send an update letter, never heard back and have droppped the issue completely

[chook]

I wrote a thank you letter about six months post tx and received a note back from the donor's daughter about a year post tx, along with a small ceramic butterfly that hangs in our kitchen so I can see it every day. When the response from the donor's family arrived, I was stunned - it was so not expected. I put off reading it for a few weeks and still sobbed and sobbed as I read it - I blame the drugs!! It was a lovely letter that told me our donor was a beloved mother, a teacher and someone who always ran late I wanted to send something 'tangible' back but was wondering if it would be appropriate. After reading all these posts, I think I will. In my first letter, I was still recovering and now, I just want to reiterate to the donor's family how every day without dialysis is a bonus.
On the other side, my kidney sister (we share the same donor) felt she couldn't write, was not comfortable about it but was okay with me mentioning her in my thankyou letter. Recently she has told me that her Mum would like to write, which is lovely.
I don't think I would want to meet our donor's family - just not sure how I'd go with all that.

[rsudock]

My first kidney transplant the family said they didn't want or need to be contacted....

xo,
R

[okarol]

I agree, I would not require anyone to communicate, neither donor family or recipient.
For me, I think if I donated the organs of someone in my family, I would love to know they were actually successfully transplanted and that the gift(s) was functioning. The procurement agencies protect the info regarding the recipients, so sometimes you may know nothing.
The note could be short, something like "Please allow me to send deepest sympathy for the loss of your loved one. I want to let you know how this gift of life has affected me and my family. I had kidney failure since age ___ and began dialysis at age ___. The wait for a kidney where I live is ___ years and dialysis for me was _____. I am now doing well since the transplant and am able to (work/go to school/travel/raise kids/etc) and am so grateful for the chance you have given me. Thank your giving me this gift. I plan to take very good care of it."
The donor family can tell the procurement agency from day one if they do not want to hear from recipients, so even if you wrote a letter it would not be passed on.

 

[RichardMEL]

wow Chook that's amazing. I guess since it was like six months later you really wouldn't have thought you'd get anything back. I mean I sent my letter off about 4-5 months ago and not that I ever expected anything back I certainly feel that it's unlikely now. I also wonder how I would feel reading something like that - so lovely of the daughter to write such a loving tribute to her mother and to give you some idea of who she was - wonderful yet touching and obviously distressing in terms of their loss.

I also agree that I think it would be weird to meet the donot family. I don't know what I would say in person or react to whatever they had to say - and I think this is one of the reasons our lot tries to keep us seperated - as much as privacy but an understanding that it can be awkward, or the donor family could expect to find some part of their loved one living on in the recipient, or maybe expecting more of them - ie: suggesting how they should live their life, or maybe even expecting some kind of tangible thanks ... a whole minefield there and yeah it would be quite strange.

This is such a complex issue with so many facets and one of those moral/ethical kinds of things where they are no "right" answers I think. All I know is that, for me, I have done what I felt was appropriate and whatever happens, well we shall wait and see, but I would be absolutely shocked to get a response at this point in time - but Chook's experience shows well maybe it takes time between the intermediate people etc to sort out so who knows.

Oh, as for sending something back like the butterfly or something - yeah that would be a bit funny (to be honest I'm surprised that was allowed through?!) - I would discuss it with the TC and see how comfortable you are with that. It does sound though that this daughter is a lovely person and would probably really appreciate anything.

[chook]

Anything I send will go via the ransplant co-ordinator, as after all that is part of their job to determine what is appropriate. And if it was decided not to send it on, I'd be fine with that, too. I'd just like another opportunity to reiterate what getting a donor kidney has meant to our lives. 

[smcd23]

Tony mentioned today that the transplant social worker came to ask him how it was going to change his life etc because they were writing a thank you letter. I told Tony again that he could (I mentioned it to him in the hospital and I don't think it registered because of the pain meds) and he's interested in writing a letter together in a month or so. I think having both our perspectives on it will be good.