A Cold But Successful Kidney Walk

This weekend my husband (Neil), son (Paul, my recipient), and I participated in our umpteenth National Kidney Foundation Triangle Kidney Walk [see my post on our long history of kidney walks], in Durham, NC. We were thrilled to learn that it set a record for donations: more than $97,000, with money still coming in. I think it broke another record, too–this may have been the coldest one (I know it’s the only time I’ve ever worn a winter coat over my Kidney Walk tee shirt).

Because of the damp chilly weather, the Walk organizers decided to shorten the route. What was supposed to be a 2.4-mile loop was reduced to just 1 mile total. True, my fingers were numb even before it was over, but we were still a bit disappointed.

It was long enough though to fall into conversation with a woman doing her first Walk. She’d driven all the way from the Pinehurst area because her mother had died recently from kidney failure, and she felt she had to do something. Like so many of us, she’d known very little about kidney disease before her mother started dialysis 4 years before. A few family members had planned to come along, she said with a little annoyance, but one by one they’d backed out. To her credit she came alone.

We talked about how little is known about kidney disease and how important it is to focus more attention on education in addition to research. We learned a startling statistic before the walk started: the U.S. National Institutes of Health, which is the main source of health-related research in this country, spends $568 per patient/year on cancer research. Kidney disease research accounts for…$29 per patient/year! I thought I’d heard it wrong and had to double-check before finalizing this post. And yet chronic kidney disease affects more than 30 million Americans. It’s yet another reminder of how important that new public awareness campaign is [see my previous post].

We saw lots of familiar smiling faces at the walk, many peering out from under wool hats. Friends from Donate Life NC/WELD (Women Encouraging Living Donation) were working a table this year. One of them, Dolores McGrath, a fellow NKF Kidney Advocacy Committee member, would be joining me for my first “official” visit to the state legislature this week. (More on that in my next post!)

That’s Dolores McGrath, center; and Deanna Kerrigan, Donate Life NC/WELD director, right.

Powerful Push to Promote Public Awareness of Kidney Disease

I’ve long been amazed and frustrated that most people know little about kidney disease and are unaware of the public health crisis: nearly 100,000 people in this country are waiting for a kidney from a deceased donor, and most will wait several years. For many, that’s too long, and thousands die every year because they didn’t receive a kidney in time.

That lack of information is widespread and includes educated, otherwise knowledgeable, well-informed people. Most of the 30 million-plus people in this country with chronic kidney disease don’t even know it yet, so if people paid more attention to their kidneys, and healthcare providers focused on early detection, kidney disease could be treated before it reached life-threatening kidney failure. Just think of the thousands—maybe millions—of lives that could be saved!

That’s why I was very excited to learn that the public awareness part of that amazing kidney health initiative [see July post] just got some real teeth. The National Kidney Foundation (NKF) is forming an important partnership with the Department of Health and Human Services (HHS) and American Society of Nephrologists (ASN) to promote the Public Awareness Initiative portion of what’s officially called Advancing American Kidney Health initiative. 

Did you know that one-third of Americans are at risk for developing kidney disease, not only because of diabetes and high blood pressure, but also cardiovascular disease, obesity, and family history of kidney disease? For certain groups, particularly African Americans and Hispanics, the risks are especially high: African Americans are three times as likely as whites, and Hispanics nearly 1.5 times as likely as non-Hispanics, to develop end stage kidney failure.

Even for people who are not at increased risk, my family knows well that our kidney health should never be taken for granted. If you read my son’s post on this site on the anniversary of his transplant, you may recall that he developed his kidney disease from a lingering strep infection. He was young and otherwise healthy, but 5 years later he was on dialysis, and 2 years after that, I gave him my kidney.     

The collaboration by HHS, NKF, and ASN will provide education about the risks of kidney disease and promote the early detection and management of kidney disease to improve patients’ results.

 For more information on the partnership, the Initiative, and kidney disease in general, read the complete announcement here.

Living Donor Registry and At-Home Test for Donors

Thinking about becoming a living kidney donor but wonder where to start? Maybe you know someone who needs a kidney and don’t know if you’d be a match. Wondering if there’s a central way nationally to register your interest and be guided through the process?  Surely there oughta be, but there really isn’t, although kidney registries perform some of that function (see Resources). That may be about to change.

Last week we heard about some exciting developments for both the nearly 100,000 kidney patients waiting for a transplant and people who want to start the process of becoming a living donor. Donate Life America and Fresenius Medical Care Foundation announced that they were teaming up to launch the first-ever national, universal registry of potential living kidney donors and to pilot a simple, at-home saliva-sample test for donors.

Did you know that little more than 20,000 kidney transplants happen in this country in a year (about two-thirds of them have a deceased donor)? That’s not much, and clearly, it’s not enough. There simply aren’t enough eligible deceased donors alone to fill the urgent need. Some patients languish on the waiting lists for 5 to 10 years. For many thousands of them, that’s dangerously long. As a result, each day about 16 people die in this country because they didn’t get a life-saving kidney in time. Every day.

Donate Life is better known for its important work in promoting deceased organ, eye, and tissue donation through the national organization and affiliated state programs. In recent years though, with the pressing need for transplants, it’s expanded its mission into living donation. In North Carolina, for example, I’m a proud member of my local Donate Life NC WELD (Women Encouraging Living Donation) branch and have written a few posts about it–see one example.

If the name Fresenius looks familiar, you probably know it as the huge private dialysis provider. But this is its separately operated nonprofit. The registry is scheduled to be up and running in spring 2020, and not many details have been released. The at-home tests, though, are supposed to be piloted in a few transplant centers between now and February 2020.

Periodically, there’s an outpouring of interest in kidney donation in response to an individual’s publicized need of a kidney. A family member walks around town wearing a sandwich-board or buys space on a billboard to spread their plea. Only some of the people who reach out get tested, and only one becomes the donor. More often than not, those other potential donors just vanish and with them the chance of saving another life. With the exception of some limited experiments, there has been no way to register these people and to capture and direct that interest.

Photo by Isaque Pereira on Pexels.com

To patients in kidney failure and donation advocates, that lack of direction is a particularly tragic waste of potential. This registry just might make all the difference.

Just How Unlikely Is It for a Donor to Need a Transplant?

I just read a stunning statistic that was extremely reassuring for living donors, so I just had to pass it on. You may already know that living donors have less than a 1% chance of someday developing kidney failure themselves. Did you know that in the “unlikely event” that a living kidney donor ever needs a transplant themselves, they are given priority on the national transplant waiting lists? That would mean they could receive a kidney from a deceased donor in a matter of weeks or months, not years—thus, probably avoiding dialysis. That’s certainly comforting.

But “unlikely event” takes on a whole new meaning when you see this statistic: Of the 60,000 people who donated between 1998 and 2007, only 11 were added to the transplant list! Do the math, that’s about 0.02%–two-hundredths of 1%. And if you were part of a kidney swap or donor chain through the National Kidney Registry, you would receive priority to receive a living donor kidney. I’d say those are damn good odds.

5 Truths about Becoming a Living Kidney Donor

I just discovered an embarrassing glitch (aka technological error) in this brief post, so I’ve corrected it and reposted.

There are still many myths about what’s involved in donating a kidney, and here are a few. I first included these in an article in 2017 and have already needed to update a couple of them because many aspects of the process have gotten easier. How many of the questions can you answer correctly?

Photo by Pixabay on Pexels.com

True or False: The surgeon removes a rib to get to the donor’s kidney.

False: Thanks to minimally invasive laparoscopic surgery (the standard of care), I had two tiny slits and a three-inch bikini incision.

True or False: Donors must be young.

False: More than a third of living kidney donors are over 50. It’s the health of the kidney–plus the donor’s overall health–that counts. I was 58 when I donated mine.

True or False: Donors stay in the hospital for a few weeks.

False: A typical stay is now 1 or 2 days.

True or False: Donors need to miss work for 3 to 6 months.

False: I could have gone back to my sedentary job as an editor in 2 or 3 weeks. A laborer might need a couple of months.

True or False: There’s no turning back.

False: You can change your mind at any point.  My transplant nurse coordinator, social worker, psychologist, nephrologist, and transplant surgeon all assured me that I could.  My son would be told only that I had been eliminated.

This post is drawn (and updated) from an earlier, longer post I wrote for WELD’s blog. The original 2017 article appeared on the National Kidney Foundation website.

5 Truths about Becoming a Living Kidney Donor

There are still many myths about what’s involved in donating a kidney, and here are a few. I first included these in an article in 2017 and have already needed to update a couple of them because many aspects of the process have gotten easier. How many of the questions can you answer correctly?

Photo by Pixabay on Pexels.com

True or False: The surgeon removes a rib to get to the donor’s kidney.

False: Thanks to minimally invasive laparoscopic surgery (the standard of care), I had two tiny slits and a three-inch bikini incision.

True or False: Donors must be young.

False: More than a third of living kidney donors are over 50. It’s the health of the kidney–plus the donor’s overall health–that counts. I was 58 when I donated mine.

True or False: Donors stay in the hospital for a few weeks.

False: A typical stay is now 1 or 2 days.

True or False: Donors need to miss work for 3 to 6 months.

False: I could have gone back to my sedentary job as an editor in 2 or 3 weeks. A laborer might need a couple of months.

True or False: There’s no turning back.

False: You can change your mind at any point.  My transplant nurse coordinator, social worker, psychologist, nephrologist, and transplant surgeon all assured me that I could.  My son would be told only that I had been eliminated.

I just discovered an embarrassing glitch (aka technological error) in this brief post, so I’ve corrected it and reposted. It’s drawn (and updated) from an earlier, longer post I wrote for WELD’s blog. The original 2017 article appeared on the National Kidney Foundation website.