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Advocacy Living Donor Misinformation Living Donor Risks

This is How We Save the World, part 2

In my attempts to procure support for living donors, I found a site whose url promised just that – with an .org extension even. Upon rudimentary examination however, the site was bland, non-descript and painfully out of date.

I sent the following email, which has yet to acknowledged in any way:

To: info [at] livingorgandonor [dot] org
Date: August 21, 2008.

It is unfortunate that after months of research on living donors and kidney transplants, I only now run into your site. While I didn’t exhaust the information contained there, I was dismayed to find your statistical information ends at 1999. Have you stopped updating in lieu of other pursuits?

While your site seems to give a cursory overview of what it means to be a living donor, there is much information omitted. New surgical procedures, legal issues that differ by state, and most importantly, addressing the emotional and psychological well-being of the living donor. Your site, like every other site I’ve encountered, treats the living donor post-transplant as an afterthought.

95% of today’s transplants (grafts) survive the first year, but what of the other 5%? With over 6000 living donor transplants performed in 2007, that leaves approximately 300 living donors grieving and struggling to understand the tragedy befallen them and their intended recipient. Yet this phenomenon warrants nothing more than a single sentence on your site, with no suggestions on how to come to terms with the understandable anger, sadness and self-recrimination that follows such an event. Transplant clinics themselves lack the support system to deal with these unforgotten heroes, and the national organizations behave as if they don’t exist out of fear that acknowledging their pain might dissuade some people from donating.

If you have no further interest in the issue of living donors, please pass the torch on to someone who will keep the site relevant and updated. Otherwise, do all past and future living donors a great service and keep the site as thorough and current as possible.

Thank you,
Cristy

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