Why All the Fuss about Finding a Living Donor?

Did you ever read about the kidney patient who wore a tee shirt at Disney World emblazoned with a plea for a donor (and found one)? Or maybe you’ve heard of people putting up a sign on their car or on a sandwich board saying they’re looking for a type O donor. Were you moved–or puzzled?

If you have a loved one or acquaintance who needs a kidney, you probably have a good idea of why people might go to such lengths to find a live donor.  Aside from the inescapable reality that there simply aren’t enough deceased-donor organs available in general (about 113,000 Americans are waiting for one), live donation offers very real advantages. Here are just few big ones:

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1-The wait is much shorter. Kidney patients in the United States may spend 5 to 10 years on the wait list for a deceased donor. About 16 patients die every day because they haven’t received the life-saving organ in time. If you have a live donor, your wait could be a matter of months instead of years.

2-Because a live-donor transplant can be scheduled—as opposed to a patient waiting for “the call” that a potential kidney match has become available (and needing to get to the transplant center within hours)—it can be done under optimal conditions. That means at the donor’s convenience but also when the patient is at his or her strongest. If one or the other is even mildly sick when the transplant is scheduled, it can be postponed for a few weeks till conditions are just right.

3-The two surgeries are typically done at the same time and often on the same corridor (with the notable exception of some paired donations, which often are hundreds of miles apart). The shorter time that the kidney is removed from the blood supply—sometimes a matter of minutes—the sooner it will “wake up” and start to function in the recipient’s body.

4-Because the kidney starts to work immediately, the patient often begins to “pink up” and feel better the same day. With a deceased-donor kidney, there’s sometimes a delay of a few weeks, during which the patient generally needs to be on dialysis.

5-For all of these reasons and more, a live-donor kidney typically lasts significantly longer than one from a deceased-donor: an average of 15 to 20 years versus 10 to 15 with a deceased donor. But I know of many recipients of live kidneys who have had theirs for more than 30 years—the record is a jaw-dropping 50 years! Deceased-donor kidneys only rarely last more than 30 years.

If you think the benefits of live donation are only for the recipient, see my post on the benefits of live donation for the donor!

Preparing The Greatest Gift

My co-author, Betsy Crais, and I have been busy making revisions and updates to our book manuscript (The Greatest Gift: The Insider’s Guide to Living Kidney Donation). With the pandemic necessarily dominating the news and publishing world, this seemed like a good time to concentrate on honing our manuscript rather than sending out proposals. As we prepare the final chapters, we’re noticing some key trends since we started working on it 5+ years ago (back when we were both working full time and unable to devote much time to it):

Social media is playing a bigger and bigger role in kidney patients’ search for donors. I get requests every week to “like” a page to help someone find a donor. The National Kidney Foundation’s Big Ask/Big Give workshops, which Betsy and I have addressed in Chapel Hill and Raleigh, NC, encourage and train kidney patients and their families and friends in how to get the word out that way.

Potential donors are learning that they don’t have to be related to their recipient. Perhaps because of the social media involvement, more nonfamily members are volunteering to donate to a friend, neighbor, or colleague. Antirejection meds have come so far that, though well-matched pairs still offer the best chance of long survival, the so-called “perfect match” is far from being a requirement for a kidney transplant.

Paired donation (aka “kidney swaps”) have really taken off. Let’s say, you want to donate to Alice but you’re not a match; maybe Jane, who wanted to donate to Bill but couldn’t, can donate to Alice and you can donate to Bill. Computer formulas and kidney registeries make it all possible. In 2006, when I donated to my son, paired donation wasn’t even on our radar, and no wonder: there were only 72 such transplants in the United States that year. In 2019, there were 1,118! It doubled just in the past 5 years.

Nondirected donors are playing a bigger role. These rare individuals (a few hundred each year in the United States) make the selfless decision to donate to someone they don’t know–and may never meet. Sometimes their donation can initiate a domino chain of kidney transplants across several transplant centers.

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As we start to wrap up The Greatest Gift, I may post a few samples here from time to time.

The Greatest Gift

Carol Offen

Between us, my son and I have four kidneys—not very remarkable, except that he has three of them. I gave him one of mine about twelve years ago. The reason was simple: after spending nearly two years on dialysis, he clearly needed the kidney and I didn’t. I still had another that worked just fine so it was a perfect opportunity to share resources within the family. Today even unrelated people in different parts of the country can do the same, thanks to sophisticated computer algorithms. But this was more than twelve years ago.

My son, Paul, had the extraordinarily bad luck to develop chronic kidney disease—which can gradually lead to kidney failure—when he was in college. He was otherwise healthy, we had no family history of it, and he didn’t have diabetes or hypertension. Plus he was skinny.

What he had was a lingering strep infection.

Keep reading!

This post is excerpted from an article I wrote for the Fall 2018 issue of South Writ Large, a quarterly online magazine published since 2007. The theme of the issue was sharing resources, so living kidney donation was a natural fit.