Donors Say (and Get Asked) the Darndest Things!

Living donors and about-to-be donors in Facebook support groups (among other places!) are an incredibly supportive, caring bunch of people. I discovered these terrific groups just a few years ago, long after I donated to my son in 2006. We rejoice at one another’s exciting news and “kidneyversaries” and try to offer comfort in times of sadness. We turn to one another for advice, practical tips, recommendations, prayers, stories–you name it.

In a much lighter request recently, one soon-to-be donor reached out to a group to ask what were the silliest questions people had been asked about donating. It led to a delightful exchange of funny questions and moments—and yes, nearly every donor has them—in the donation process. Here are some of them:

Oh my God! Ohmygod! They didn’t wait till you died? Asked by a proud registered organ donor who’d just met a living donor and learned the key difference.

Are you aware that you cannot at any point have your kidney back?” Asked by a doctor as the donor was being wheeled into the operating room.

Can you get it back if your kidney doesn’t work out for your recipient? Asked by a donor’s sister.

Did you donate both kidneys or just one of them? Asked by a TV news anchor.

Should I register for the Full Mumbai Marathon or the Half? Asked by a donor in India during her donor evaluation. “The Half” was the answer. So she did it, in January 2020–just 3 months after she donated her kidney!

“So, you drink alcohol once or twice a week?” Asked by staff after the nondrinking potential donor said she might drink once or twice a year. “Is this a trick question?” the donor asked.

You take no medications at all? Asked by the incredulous doctors, nurses, and other staff, when the very healthy 50-something donor didn’t list any medications.

Where’s the rest of your medical chart? Asked by the doctor who’d assumed the folder was missing because the middle-aged donor had no prior hospitalizations other than childbirth.

Say, have you ever done this before? Asked of the surgeon on the way into the operating room.

Can you do a tummy tuck while you’re at it? Asked of the donor’s surgeon (the answer was no), who reported that it was the question he gets asked most often.

If you have a funny story to add, please send it to me (carol.kidneydonorhelp@gmail.com). I’ll bet I could fill another blog post!

Helping Donors and Would-Be Donors, 1 Visitor at a Time

Well, this is exciting: I just hit the 5,000-visitors mark–and more than 7,000 views! I launched this site officially last year with a blog post, fittingly, on National Kidney Month and National Women’s Month–and what these amazing specimens have in common.

As a living kidney donor myself (I donated to my son in 2006), my goals for the site were simple:

“… to help kidney donors and would-be donors by sharing my experience here along with candid, accurate information; by debunking myths; and providing resources.”

I’m still doing that and hoping to assist–and perhaps inspire–one would-be donor at a time, if need be. I love getting questions and direct emails from visitors to the site. The Greatest Gift: The Insider’s Guide to Living Kidney Donation–the book I’m writing with Betsy Crais, a living-donor kidney recipient–is getting closer to publication. More on that in coming months!

I’ve always welcomed feedback. If you have any suggestions for the site, I’d love to hear from you: carol.kidneydonorhelp@gmail.com

Minority Donor Awareness Month

Did you know that about 60% of the 112,000 patients on the deceased-donor waiting list for an organ (most of them for a kidney) are minorities? African Americans are the single largest group, at about 29%. Making this sad statistic even worse is that registered minority organ donors make up only about 14% of total donors. Yes, you can receive an organ from someone of another race, but within-race matches have a better chance of success.

That’s why National Minority Donor Awareness Month is shining a light on this critical issue. The idea is to educate, debunk some myths (I’ve written about a few), and shorten everyone’s wait for a successful transplant. We want everyone to register, of course, but it’s all the more important for minorities. Registering to be an organ donor after you die takes only 2 minutes. You can do it online anytime on many sites, such as organdonor.gov. You needn’t wait till you renew your driver license and get that little red heart.

When we look at living donation, the gap is even wider. For example, only about 8% of living donors are African American. It’s a double whammy because the very conditions that make somebody need a transplant also rule out someone with those conditions from being a donor– such as uncontrolled high blood pressure and diabetes. Those are the two biggest risk factors for kidney disease, and African Americans and Hispanics have a much higher risk than white individuals.

Living donation has traditionally been uncommon in the African American community. A black woman I know who donated to her mother was expecting friends and family to oppose her decision. Instead, fortunately, she was able to start many meaningful conversations. People who had never thought about living donation before told her they were willing to consider it.

So start a conversation whenever you can. We need to increase those registrations and living donations–not just during Minority Donor Awareness Month.

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:

Photo by Andrea Piacquadio on Pexels.com

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!