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 this week 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) is proposing changes to the current distribution system [https://optn.transplant.hrsa.gov/governance/public-comment/].

It’s 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, 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.