Then there was the other camp-those people like myself who wanted to donate but instead approached their local living donor programs. These programs and their doctors in the end were the ones who determined who on their transplant list or paired exchange was the best match and most in need.
I remember somewhere in the middle of my testing journey, probably right around the height of the "no blogging" fiasco, someone asked me what I would do if someone found me online and asked me for my kidney, knowing I was already a willing donor partway through the testing. Actually a couple of people asked me-a good friend as well as Dr S. I remember at the time the answer seemed so clear to me-its not for me to choose. If I was eligible to donate, then the surgeons and nephrologists along with a computer would do the matching.The idea of having to choose someone was kind of terrifying to be honest and didn't feel right-for me. There was a part of me that wasn't sure if it was fair-after all the transplant wait list is supposed to be an equalizer that those in the most need were helped first.Who was I to mess with that? To do otherwise (at that time in my life anyway) to me seemed a bit like playing God (or messing with destiny-however you want to look at it).
Fast forward to now: there is a big part of me that now understands how impossibly painful it is to watch a family member sit helplessly on an indefinite waitlist for a kidney they may not get in time. I also now understand that there are many kidney patients who can only receive a transplant from a living donor-usually because of previous transplantation failure(s) that have created kidney-hostile immune systems. Basically in order for a new kidney to take, the doctors need advanced notice of the surgery (therefore cadaver donors wouldn't work) so they can suppress the immune system to give the kidney a better hope of integrating into its new home-similar to what is done prior to a bone marrow transplant. If those people do not have anyone in their immediate lives who can help and they don't have someone to go into a paired exchange with them, they are essentially sentenced to a lifetime of dialysis. Dialysis is not a cure. It is an unpleasant, limiting option to dying. There is always that chance a completely non-directed donor may enter the system and be a match...but with only around 50 of us "non directed" donor types in Canada so far and over 3000+ people waiting for a kidney each year (121,000 in the US)-those odds aren't much better. I'm not trying to be dark in gloomy-that's just the reality. So, if I or someone I loved was in that position, I'd want to feel like I was trying everything I could to help. I'd want to feel like I was doing something other than waiting. I probably would be all over Twitter, blogging and Facebooking, trying to raise awareness and coax SOMEONE out of the woodwork to be tested. Several someones. Until we found a kidney.
I've seen some of those tweets now. I've read some of those blogs. There is a part of me now that feels bad I didn't see them before I started on this journey-maybe I could have helped them instead? I do not for a second regret donating and I am sure Leftie is where he was most needed, hopefully thriving. But it's hard reading people's stories (like Jacqueline, a mother from BC who is searching for a kidney who I am very much rooting for) and seeing pictures of their kids, thinking-I could have helped her/him. Especially my blood type being O+, the universal kidney donor-type needed my so many. It's made me wish that Dr. Y had found a third, healthy spare kidney in my abdomen and that I'd just need a little more recovery time and then I could loan that one out too. But obviously that isn't the case and helping isn't an option.
The whole concept of "advertising" or lobbying for a kidney is quite the ethical debate these days, in medical circles as well as the kidney community. I remember reading a Kidney disease forum a few months ago where a kidney patient came on and point blank asked if anyone knew of someone willing to donate a kidney. Within moments there were several scathing replies from other people with renal failure, basically telling her waitlists exist for a reason and how dare she try to jump the queue. Some thought her request was tacky and offensive while others clearly thought it was more than that: she was being underhanded and unfair. While the "rule following" part of me saw where they were coming from-I also couldn't fault her for asking. And I was kind of shocked at how angry people were getting. I mean, nothing was stopping those other people (except themselves) from increasing their odds by going public with a search for a kidney - for example it wouldn't impact their place in the waitlist. They were just as able to do what she was doing but they weren't for whatever reason. And in some cases it works - so I see why people want to try.
A "kidney friend" of mine, Amy, answered such a request. She knew a woman (Kirti) through Twitter who started tweeting and Facebooking about her mom's need for a new and improved kidney. Amy (like myself) lost her dad years ago and knew she could help this family. So she stepped up, got tested and was a match. In April of this year she was able to give Kirti's mom a tinyfabkidney and a new lease on life. They are paying it forward and hoping to raise awareness by posting stories of other people seeking donors on their website. It worked for them-perhaps it may help some others. More and more of these types of stories are showing up in the media today-more in the US than here in Canada but we are likely not far behind.
I'm still on the fence as to how I feel about people actively advertising for a new kidney. I do know that the people who step forward when they read tweets, blogs or see stories on the news and offer to be tested are very admirable people the world needs more of. I know that for me, I made the right choice in donating mine the way I did because I can be terrible at making a decision. Having my recipient selected for me was probably more appropriate because of this-I'd still probably be trying to make a decision. I also don't still wonder if choosing your recipient as a non-directed donor is playing God or messing with the "order of things". So is reaching out on the interweebs to find a donor breaking the rules? I think at the end of the day, when our choices are about survival or protecting our loved ones, a lot of etiquette, guidelines and what is "fair" can become pretty subjective. I don't think I could ever judge someones behaviours that were rooted in trying to save themselves. You just can't judge situations you've never been in. You just can't.
