I think there’s no doubt that triathletes love to talk triathlon. Likewise, kidney donors like to talk to other kidney donors and prospective donors about the special donation experience so few share. We just all know what it was like to not know much about what we were getting into. So, whether it’s triathlon or kidney donation, you want to talk about it.
There’s so much to learn, and you’d be a fool not to learn as much as you can. It automatically makes for a community; whether you are shy or outgoing, you instinctively seek out other people in these special groups – to learn from, commiserate with, give support to, etc.
I was reminded of this recently. First of all, I just completed my first race of the season and got a PR (personal record). I’m so thrilled! It was the Columbia Triathlon (Olympic distance), a very challenging course, and I did it in 2:51, sixteen minutes faster than last year. One reason I did so well is because the race is local and I could train on the course and learn from my husband and other people in my Tri club. Knowledge is power, and knowing the course is huge. Plus, I worked hard in my training, which was probably a big thing as well.
On the kidney donation side, I was reminded of this through a listserv I’m on. I’m on the livedonor@listserv.kidney.org mailing list. I recommend that other donors/prospective donors join it. [Update: not even a week after I wrote this, they discontinued the listserv because it had gotten too big to manage. So, now the only resource I can suggest is http://www.livingdonorsonline.org, which has very useful forums.]
But I have to give you a warning… It can be depressing and overwhelming at times – to hear what other donors say. There is a lot of support, but there is also a lot of paranoia about how much we still don’t know about the long-term effects of donating a kidney. I find that when a really negative thread starts going, I have to stop reading. But you can’t totally ignore the excellent resource of what other real donors are going through. You just can’t find a lot of that info out there.
The bad thing is that it is all anecdotal, and although some people post scientific articles, you can’t be sure what their biases might be. So all you can do is file it away for future reference or do your own further research. Nevertheless, I think it is an important resource, because it seems like non-donors and folks at the transplant centers do not want to see or discuss any of the possible negatives of donation. It’s not that they don’t care about you or care whether you are fine following donation. It’s just that they only want to celebrate this thing you have done to help another person, and they want that to be the end of the story. I think we would all like it to be that way. But the truth is that we don’t know. We know that most of us are fine right after the surgery, and we can lead a normal life. But we don’t know the most likely long-term effects. And, unfortunately, no one else wants to talk about it except us.
But like I said, we love to talk about it. So that’s a good thing 🙂
And, despite it all, I still haven’t run across a donor who wouldn’t do it all again. But I do think most of them wish they had been more informed. It’s the same way you feel in the first moments of a rough swim at a race you’ve never done before: Geez, what did I get myself into?
But if you do your research and your training, it will all pay off in the most glorious way. At least that’s the way I felt after my donation and also yesterday, at the Columbia Tri.
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