A friend and fellow donor started a nonprofit a few months ago called Waitlist Zero. It’s goal is to protect and enhance donor rights and care. Part of the idea is that there would be more living kidney donors if we in the US took better care of our donors.

This resonates with me in particular. I donated over a year ago, and since then, I’ve suffered from a complication that no one warned me about, having to do with enlargement of a testicle and possible scar tissue. I alerted my transplant team to this immediately following the donation. They said it would go away. Six months later, it hadn’t.

Because the transplant team wasn’t concerned, I went to a urologist, which would be on my own dime since insurance companies consider it a separate issue apart from the donation itself. But I’d been laid off during my recovery, which meant that when I found work (and insurance) again, I’d have to meet a new deductible of $1,000.00, my second such deductible on the year. In fact, my insurance paid for almost nothing last year.

In spite of that, I went to the urologist, who ordered an ultrasound. The test showed nothing abnormal, and no diagnosis was made. The urologist said whatever I was experiencing was unlikely related to donation–even though the problem wasn’t there before, and the testicular enlargement is a very well documented complication for men (though it does usually go away on it’s own). The doctor gave me a prescription and told me to come back in six months.

My insurance refused to pay for the prescription, saying there was no documented medical need for it. The monthly prescription ran me $300.00.

Then I lost my job again. I now have no insurance, which means I will likely have to cancel my six month follow-up, which is in two weeks.

Between deductibles and the ludicrous number of exclusions insurance companies are allowed to have, virtually all of my medical expenses associated with this complication have been out of pocket. If I obtain insurance again, I’ll have another deductible to meet. The bills have already piled up, and I can’t afford any more just now.

And in the grand scheme of donor complications, I’m one of the lucky ones in America. My complications aren’t life threatening and don’t intrude that much on my day to day. Others have it worse. And none of us can get the care we need without fighting with insurance companies who primarily hide behind smoke and mirrors and leave donors without advocates.

Waitlist Zero highlights an important crisis that a country as supposedly powerful as the United States has no excuse for allowing to continue. There are over 100,000 people in the US on the transplant waiting list. There are over 6,000 donors per year in the US who, for their service in saving the lives of others, ought to at least have lifetime medical care. And yet the United States–hellbent on prohibiting any sort of coercion when it comes to donation, probably in order to minimize lawsuits rather than actually protect donors–has some of the fewest post-donation practices in place to care for donors. And knowing how little care exists beyond donation, many are deterred from donating.

It’s time to change things. There’s no reason that over 4,000 people should die each year waiting for a kidney. There’s no reason that over 6,000 people a year should have to incur sometimes lofty medical expenses because they had the courage to save someone else’s life. And there’s no reason that over 100,000 people per year should wait and wonder, most of the time on dialysis, how long they can go on without a functioning kidney.

Please check out Waitlist Zero and get involved.