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.

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.

The Top Kidney Donor Blogs

A short while ago I came across “The Top 30 Kidney Donor Blogs and Websites to Follow in 2019.” It lists individual personal blogs from donors and recipients, plus from major organizations (nearly half of the websites listed, in fact) like the National Kidney Foundation and the National Foundation for Transplants. Last week I noticed that there was a way to submit a blog, and I did. So, guess who’s #10 on the Top 30 list now?

Sure, the Top 30 is a marketing vehicle, but it’s also a convenient way to find interesting donor-related blogs; you can click to see their latest posts. Each listing also tells how frequent the blog posts are (mine average four a month), the number of Twitter followers (I have a modest but growing 280), and such.

This blog went live just several months ago, in March 2019. I’ve been delighted to see how well it’s been received. I didn’t know what to expect in terms of number of views and visitors, but I’m pretty pleased to have surpassed the 3,000-views mark (and more than 1,700 visitors).

I’ve enjoyed sharing my living-donor experiences and recipient-family insights with you; helping to encourage living donation–not by proselytizing but by offering candid, clear, practical information; and fighting to protect the rights of kidney patients and donors (for example, check out these blog posts). I’m very glad that more people may find their way here.

Still Walking after All These Years

Another Triangle Kidney Walk date is approaching: Sunday, November 17, in nearby Durham, NC. My husband, son, and I (our daughter’s up in Brooklyn) will be there as usual. We’ve walked in more of them than I can count: three or four recent National Kidney Foundation walks starting at the present Durham Bulls Ballpark location; maybe another four or five NKF walks in Research Triangle Park, which wove through the campus of my long-time employer, RTI International, often a sponsor; plus a few Kidney Kare run/walks in Carrboro, NC, sponsored by the University of North Carolina Transplant Center.

Just a small sample of my collection of tee shirts from many years of Kidney Walks in North Carolina.

We’ve walked in blistering heat, when the water bottles the helpful volunteers were distributing were downright hot; in chilling cold, with our hoods up and gloved hands clutching thermoses; stepping gingerly over deep puddles, dripping wet as we shunned umbrellas (so far never in snow). Still, the events are usually fun and always inspiring. In the midst of the upbeat music, entertainment, and snacks, there are of course speeches, information, organizations with handouts (so excited that NC WELD–Women Encouraging Living Donation–will have a table this year!), and health screening booths.

I remember the middle-aged man who spoke to the gathered walkers before the start of the walk a couple of years ago. He described being at one such walk a few years before and deciding to do the screening. There he’d discovered to his shock that he had stage 4 kidney failure. That Kidney Walk saved his life: he began dialysis within a few months and was able to have a transplant a couple of years later.

It bears repeating: chronic kidney disease is a silent killer. Most of the more than 30 million people in this country who have it don’t know it because they don’t have symptoms yet—and may not until it’s too late. The transplant center and NKF have mobile units that do screenings around the state throughout the year. Education, screenings, and research all cost money.

That’s why we walk. Proudly wearing bibs that say DONOR (me), RECIPIENT (my son), or DONOR FAMILY (my husband), we chat with other walkers. We’ve met hopeful families of kidney patients desperately in need of a kidney, transplant recipients happily walking with a bounce in their step for the first time in years, patients who’ve been on dialysis for more than a decade and can never have a transplant because they have too many other serious health conditions–some are not strong enough for the walk but come out to volunteer and help raise funds for awareness, education, and research.

Please consider donating whatever you can or just share this post on social media or email it to your families and friends. Our team is called the Comeback Kidney, named after our nickname for the kidney I donated to my son more than 13 years ago. But whether or not you donate to our team, to the Kidney Walk in general, or to any kidney disease organization, please spread the word about the importance of kidney heath—and be sure to get your kidneys checked.

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.

DonorPlus, the App for Potential Living Donors

I’ve long thought that living donors are a special breed. Whether we live in Iowa or North Carolina, the United States or India, Australia or France, I fully believe we have more in common than what separates us. As I discovered so vividly at the Living Donor Rally at the Bean in Chicago last year, we have an extraordinary bond. We “get” one another on a level that transcends age, gender, race, country, or politics.

I was particularly reminded of that recently when I received an email from a living donor in Australia. Kaye Price, an enterprising living donor advocate, with whom I’d had just a couple of exchanges, was writing to check on my safety in the path of Hurricane Dorian. I was touched by her concern, but the funny thing is that I didn’t feel that she was a stranger. Like me, she’d turned her experience as a living donor (to her sister-in-law) into a mission. She founded a free app, DonorPlus (available through Google Play and the App Store), with another entrepreneur/living donor advocate, Patricia Hunt. Much like this website and my book with Betsy Crais, The Greatest Gift, their app “informs, supports, and empowers living donors.”

Although certain procedural specifics obviously vary by country, the basics are remarkably universal. DonorPlus guides the potential donor through the decision making and the preliminary interviews. It’s definitely applicable to potential donors in many countries. The website, DonorPlus.org, features donors’ stories and even a large selection of donor merchandise.

The app is in the early stages, but they’ll soon be releasing a more advanced version that includes an expense tracker and planning tools. In addition to practical information for potential donors, the app will connect people with previous donors to make a direct connection. Kaye and Patricia have big plans for it and would love to get input from people all over the world. They have succeeded in attracting investors in Australia and will be traveling to the States soon to meet with major donor groups and medical centers.

I hope we can connect while they’re here. Meeting fellow living donors and supporters always feels like meeting old friends.

NC WELD: Time, Passion, and Commitment

Last week was the first local NC WELD (as in Women Encouraging Living Donation) meeting of the year, and I’d looked forward to seeing the Triangle group again. The last meeting, held at my house in May, featured two Duke transplant surgeons. Unfortunately, September’s meeting drew a very small group. We met at the home of executive director Deanna Kerrigan (formerly, Mitchell) and caught up on summer travels and donation advocacy activities (yes, they knew about my National Kidney Foundation Kidney Advocacy Committee approval!) over yummy mini-pizzas and brownies. Most of all, we brainstormed ways to spread the word about living donation and, specifically, the WELD Triangle group, with information packets for prospective donors, flyers at transplant centers, and lots more.

Building a new group in a region takes time, passion, and commitment. WELD will get there one living donor at a time. Happy to be part of the effort! Looking forward to a full house next time.

With Katherine Ramirez and Deanna Kerrigan of Donate Life NC, at the September 2019 WELD meeting.

Living Donor Champion Redux

This week Betsy Crais and I spoke at another terrific Living Donor Champion workshop. I’ve written about the one we did in the spring at UNC Transplant Center plus the National Kidney Foundation’s Big Ask, Big Give in June at Rex Hospital in Raleigh, NC.

Amy Woodard, UNC Transplant Center’s living donor coordinator, leading the Living Donor Champion workshop in September 2019.

It’s funny that I’m starting to feel so comfortable at these valuable events. As I told the group, I used to be intimidated by the very heavy subject of kidney transplant and donation and doubted that I could possibly add to the discussion–until I realized that just sharing my own story and my perspective was valuable. How could I have forgotten how comforting it feels to talk to someone who’s been through the experience for people who are overwhelmed, confused, and no doubt frightened? Now that I have a few years of research in connection with our book on the subject plus submersion in the kidney support community as we expand our advocacy efforts, I feel even more equipped to talk about all this.

We met a family there from Raleigh—the husband was in need of a kidney, and his 20-something daughter had just surprised him with the news that she was testing to be his donor. I could feel their excitement and knew that this step has a huge impact on the entire family. I told them about my website, of course, and urged their daughter to contact me if she has any questions or just wants to talk about it. [If she’s made her way to this post, I hope she knows I meant it!]

Wishing all the attendees good luck on this very special, intense journey!

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?

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.

Health Materials in Plain English

As a volunteer UNOS Ambassador, I was excited to participate in a focus group recently on using plain language in proposals about how lifesaving organs are allocated in this country. UNOS (the organization that manages the organ transplant waiting lists) was proposing changes to the current distribution system.

It was seeking public comment from people who could be affected by these changes, such as patients and their loved ones. I naturally jumped at the opportunity to combine my interest and skills as an editor (I’ve even taken workshops in plain language) and as a kidney donation advocate to advise the group on plain language–in other words, plain English.

Kudos to UNOS for creating the focus group. When an organization whose mission affects the lives of so many people (113,000 people in this country are on waiting lists for organs) considers an important change in policy, of course you want to be sure that people understand it well enough to offer valuable feedback.

I couldn’t help wondering, though, why plain language skills and training weren’t an integral part of that organization and others like it. When I was an editor at RTI International, a major nonprofit research institute based in North Carolina, we often worked on materials for federal agencies with just this goal in mind. That’s why I and many of my colleagues had had training in it.

Reviewing the documents on which UNOS was seeking public comment, I was painfully aware of how often health-related materials leave users/readers confused or overwhelmed—often both. Out of curiosity, I checked the reading level of much of the overview section, and it was 12.3—that’s a high school senior. Thousands of the patients on the wait lists, many of whom live in poverty, lack the education to understand this information. For example, replacing phrases like “equitable access to transplant” with “the way that kidneys are distributed needs to be fairer” would go a long way toward making it all clearer.

“Health literacy” is about understanding basic health information well enough to be able to make appropriate decisions about your care and that of your loved ones. That means grasping test results, being able to follow prescription instructions, understanding your doctor’s explanations. Health care providers bear a lot of responsibility for making sure their patients understand these things, but agencies and organizations that create printed or online health materials also have a responsibility to make them easily understandable. (That’s why Betsy and I wanted to write a book on living kidney donation that’s nontechnical and uses plain English.)

Health literacy is not a question of language, although people whose native language isn’t English certainly can have a particularly difficult challenge. It’s not always a matter of life and death, but it certainly can be.

Certain health-related materials, such as informed consent for participating in procedures or studies, have legally required dense sections but should always include a simplified “What This Means to You.”

Next time you’re at your doctor’s office or pharmacy and you read or hear something you don’t understand, don’t be embarrassed about speaking up. If we don’t demand clear, easily digestible information—that is, in plain English without jargon or convoluted wording—the healthcare system will continue to offer overly complicated materials. The results can be tragic.

A Donation Advocate by Any Other Name

Funny how things take on a life of their own. Less than 3 years ago when I was interviewed at length on “Your Health” radio show and asked to tell my story about donating a kidney to my son in 2006, I was a bit uncomfortable with their description of me as an advocate for living organ donation. Yes, I was passionate about the subject, never passed up an opportunity to talk about it, and was writing a book on living kidney donation, with a live-donor-kidney recipient (Betsy Crais). I’d also written a couple of op-ed pieces, but “advocate” sounded much more significant (and certainly impressive) than whatever I was doing in my own little ways.

But then I ventured out a bit and spoke at a rotary club and a couple of patient workshops. I started writing blog posts sharing my story. I began to use Twitter and Facebook to talk more generally about the 30 million Americans with chronic kidney disease and the dire need for donors—live and dead. So when two local TV news stations interviewed Betsy and me last year about our book in progress and referred to us as advocates, that time the label felt right.

And now the National Kidney Foundation has made it official, inviting me to join its nearly 200 Kidney Advocacy Committee members nationwide. The NKF advocates can

bring the patient/family voice to NKF’s legislative priorities

serve on panels and in conferences hosted by various government agencies….

I am honored and deeply humbled to join the ranks of “donation advocates.” There’s work to be done.