Interesting transplant story "thoughts on 'list exchange' (lengthy!)"

This is from a post on Living Donors Online:

Next week is my 6-month check up, and after I get all my lab results I'll be posting the long story of my donation & recovery to the 'stories' section. But I thought some here might be interested in my take on participating in the "list exchange" and the moral dilemmas it poses, so here is a preview of sorts. I'd be interested in hearing from others who've done a list exchange or who have thoughts on the moral questions.
A list exchange is a variation of a paired exchange: it allows an incompatible but willing donor to help their desired recipient get a kidney. But, unlike a paired exchange, the recipient does not get a living donor kidney, it instead gets a deceased donor kidney off the ‘wait list’, so the value of the ‘exchange’ is not quite equal. First: a word on language. Some folks refer to non-living donor kidneys as ‘cadaver kidneys,’ and, admittedly, it’s a shorter way to say it than “deceased donor kidneys.” However I was very politely reminded on the LDO forum that the families of deceased donors can be offended by their loved on being referred to as merely a ‘cadaver.’ Very impersonal, and particularly difficult to take after the tragedy of losing the loved one. So the preferred terminology is deceased donor kidneys.

Back to the main topic at hand. I’ve been told that list exchange is not an available option in most of the UNOS regions; however it IS available in the New England region. Honestly, it poses a few more moral dilemmas than a regular paired exchange. The way that my mother benefits is because, instead of having to wait approximately 3-5 years on the ‘wait list’ for a deceased donor kidney, once I made my donation, she gets bumped to the tippity top of the wait list (exclusive of pediatric patients, who retain priority) and so receives her deceased donor kidney – and gets to end dialysis! – within a matter of weeks instead of years. There is some moral question about whether the exchange is equal: I give up a living kidney and she gets a deceased kidney – we all know that there has been data suggesting that recipients have better outcomes with a living kidney transplant. That moral issue was a pretty easy one for me to deal with, though: the way I looked at it, if I had been unwilling or medically unable to donate, the best my mother could have hoped for would be a deceased donor kidney anyway. So the benefit of time off dialysis and not having to have the surgery to create the fistula clearly outweighed the difference in quality of organ.

But the bigger moral question, I think, has to do with the rest of the folks on the wait list. I do not know how many individuals who lack willing donors my mother “jumped” in line. I don’t know their health circumstances, how long they’ve been waiting (though probably some have waited the 3-5 year average), or why they don’t have any willing donors. I don’t know if they are told that they get jumped in line (I assume not.) And often in literature encouraging living donation, you hear that people DIE while on the wait list for a kidney. I always cringe when I hear that, because I have no way of knowing if the particular timing of my donation and my mother’s transplant ultimately played a role in one of those deaths. That really bothers me. And this is not just hindsight. I had thought about this aspect of the list exchange well before we did it. But I’m not altruistic at all: I wanted my daughter to have more time with her grandmother healthy. I wanted to prevent my mother from having another surgery to put in the fistula. I was quite willing to risk this harm to another in order to help my mother get off dialysis and back to a more normal life quickly. I will always have to live with that knowledge.

Add to all of that the issue of O blood type. My mother is type O: the universal donor. I believe that one of the reasons we couldn’t find a living pair in the paired exchange is because most willing O donors are far more likely to be compatible with their intended recipient than other blood types. This means that the O blood types on the wait list get a particularly raw deal and are probably more likely than other blood types to be ‘jumped’ by the lucky recipient in a list exchange. I don’t have any data on that, but it seems supported by common sense. (This leads to a general moral question about organ allocation from living and deceased donors who are blood type O, but that rant is for another day!)

Of course, one other way I resolve these moral dilemmas in my head is because I know that I donated my healthy living kidney to a recipient who did not have a willing donor. Although I’m told that he was at the ‘top of the wait list’ for my blood type, I don’t know any other information about his health or history. For all I know, he may have been one of those soon to die on the waitlist had I not made my donation. I find some solace in that. And perhaps it is better that I don’t get to meet him. If I were to find out that he was doing fine and could have chugged along on dialysis for 3 more years without major health risk, I might go back to wondering about those O recipients dying again.

I don’t know about other centers, but my transplant center did not let me meet my recipient before the surgery or during my hospital stay. I gather that this may be similar to the variation in policies across transplant centers about non-directed living donors meeting their recipients. They did inform me that he accepted The-Kidney-Formerly-Known-As-Mine fine and was recovering well. Due to a paperwork mess up, I discovered his name a couple of weeks out. (Good thing I’m not a crazy-stalker though I did try, without success, to find out about him on Google!) And about one month after surgery my social worker offered to get us in contact if both of us were willing. I had made it quite clear before surgery & at the hospital that I was more than willing to meet, but I also didn’t want to make him uncomfortable. As with any anonymous donation, I assume, it’s a weird thing to be part of – and very weird to have donated without seeing, first hand, the positive impact on the recipient’s health. I suggested that they give him my number and that way he could contact me if/when he wanted. When I went in for my 6 week check-up, my social worker said that he had called me, but didn’t feel comfortable leaving a message on my answering machine. I haven’t ever actually heard from him. The intensity of my curiosity to meet him has diminished over time (I felt much more closure after my mother got her kidney and I could see her improving health), but I still do wonder about him.

Last thing to comment on for today is that doing the list exchange makes it very complicated to answer people’s questions. I envy those who can just say: I donated my kidney to my mother. Even the paired exchange program is getting more well-known now, so saying I was in a paired exchange seems relatively easy. I usually say that I donated my kidney on behalf of my mother, and God help the fool who actually asks me what I mean by that. Then I go into this whole long-winded explanation all over again!

--Sarah
donated via list exchange for my mother on October 27, 2008