A Week to Celebrate!

Last week was quite a memorable one, jam-packed with kidney-donation milestones and special events.

First, on June 27, my husband, son/recipient Paul, and I marked kidneyversary no. 17 with our traditional celebratory dinner out (no, no special cakes–we save those for biggies like nos. 10 and 15).

Next, two days later found me in New York City at—of all places!—the Plaza. The occasion was the lavish National Kidney Registry Awards Gala honoring living donors, with a champagne reception followed by a delicious sit-down dinner in a gorgeous hotel ballroom.

I was one of more than a hundred living donors, plus donation professionals, attending from all over the country. One of the dedicated professionals I got to chat with was Cody Wooley, a very engaging donor coordinator from St. Louis University Nephrology Division. Cody was actually one of the professionals honored, and I was delighted to have my photo taken with her before she received the award.

NKR is the world’s largest paired-exchange (aka “kidney swap”) program. Founder/CEO Garet Hil (a living donor himself) started the nonprofit following his family’s desperate search for a matching kidney for his young daughter in 2007.

Since then NKR has facilitated more than 7,000 living donations.Its goal is to increase and improve living donation while removing all the disincentives to being a donor. Here are just a few of the “what ifs” that NKR has successfully addressed, largely through its Donor Shield protections:

… a family member later needs a kidney at some unknown date? Living donors can receive a voucher for their intended recipient to get a kidney months or even many years later.

… I can’t afford the lost wages and extra childcare costs while I’m recovering? Donor Shield reimburses donors up to $17,000 (up to $12,000 for lost wages and up to $5,000 for travel/lodging and dependent care costs).

—I need a kidney transplant myself one day? Living donors through NKR have priority for a living kidney should they ever need one. (Note: Of the 7,000-plus living donations it’s facilitated, NKR has never had a donor need one.)

In addition to the dinner and the impressive stats, the evening included dramatic video presentations on (and talks by) super-athlete living donors who have done multiple marathons, ultramarathons, and summit climbs. The memorable takeaway, of course, is that donating a kidney does not mean a change in an active lifestyle. Full disclosure: most living donors are more like you or me (a healthy daily walker/zumba fan) than an ultramarathoner–but the point is that those who were runners or swimmers or whatever before donation can certainly continue to exercise their passion (other than contact sports) with just one kidney.

Then, on June 30, I attended the National Kidney Donation Organization‘s living donation symposium. There I learned so much exciting new information about kidney transplants that I’ll cover it in a separate post. Stay tuned!

For related posts, resources, and information on The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Let’s Stop Spread of Misinformation on Living Donors

Where is Nicholas Kristof when we need him? Every few months or so I come across a nervous comment from a recent living donor in a Facebook living donors group who has been told she (yes, more often than not, living donors are women) has stage 3 kidney disease– despite being healthy and having relatively normal kidney function. It used to make me mad, now it makes me sad. When I saw one again a few days ago, I meant to go back armed with links to some important articles and one of my blog posts, but I never did. So, as usual, I find I need to dust off this topic and post something again. Please read here. But my platform is just a fraction of what a respected journalist/advocate like @NickKristof can employ. Please, Nick, we need you!

For related posts, resources, and information on The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Active Athletes, Artists, Academics All Illustrate After-Transplant Benefits

Riddle: What has three transplanted organs and works full time in a demanding, important career into her seventies?

Answer: Elizabeth (Betsy) Crais, my co-author and friend–the academic energizer bunny–whose retirement party I just attended at the University of North Carolina at Chapel Hill.

Betsy Crais (right, looking the picture of heath) had a kidney transplant in 2004 and a kidney-liver transplant in 2021.

In addition to her regular responsibilities as a professor and researcher, Betsy has taken on numerous roles such as leading a professional association, mentoring students, writing for publication, and more.

Impressive with or without a transplant! It occurred to me that you’ve probably seen stories about athletes who are transplant recipients and have gone back onto the court (Alonzo Mourning went on to win an NBA championship) or singers who’ve gone back on tour or into the studio (think Stevie Wonder), or actors who’ve gone back onto the stage or film set (think Selena Gomez).

But there are many more professors, researchers, contractors, plumbers, lawyers, gardeners–people you pass unknowingly throughout your day–who have been able to lead a full, productive, and rewarding life thanks to an organ donor. It may have even been a living donor (Betsy’s first kidney transplant was from a university colleague friend) or a deceased one (Betsy’s second was a dual kidney and liver transplant from a deceased donor).

Organ transplants give recipients like my son, Paul, a second–sometime a third or more–chance at a full life. If you’re not already registered as an organ donor, please take a couple of minutes to sign up (at organdonor.gov or many other sites).

For related posts, resources, and information on The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Alonzo Mourning had a kidney transplant in 2003, returned to the court in 2004, and helped win an NBA championship with the Miami Heat in 2006.

Paul Offen (my son/recipient) had his kidney transplant in 2006.

Actress/singer Selena Gomez had a kidney transplant in 2017.

Stevie Wonder had his kidney transplant at the end of 2019.

Kidney Patient Summit on Capitol Hill

Yes, I finally made it! I made it all the way to the Capitol earlier this month for in-person meetings.

Taken during a brief break between legislative meetings. That’s me in the front row (in the beige raincoat)!

With teammates Necole and Dre Roundtree, left, and Alan Levy.

With Matthew Fitting, NKF’s Grassroots Advocacy Director.

During a hectic but fun afternoon of training and getting to know my delightful team members (pictured at right), we got tips not only on the legislative “asks,” but also on the fine points of meeting with congressional staffers. In fact, we even heard from two congressional staffers who knew the topics firsthand: one of them had been a National Kidney Foundation advocate himself, another was a recent living donor!

So what were our asks this time? Alas, if they look familiar that’s simply because we’ve been there before with the same critical requests:

1-Co-sponsor the Living Donor Protection Act (you’ve read a lot about this one both here and elsewhere through the years): To end discrimination by insurance companies against living donors just because of having donated a kidney.

2-Co-sponsor the Improving Access to Home Dialysis Act: A much newer piece of legislation, this would make it easier for those who want to do dialysis in their own home (right now only about 15% of people have dialysis at home because it’s not a simple matter–it requires training and support). The act would provide lots of in-home support for the first 90 days, among other benefits. This legislation would obviously be a boon for people in rural areas who may live well over an hour’s drive from the nearest dialysis center.

3-Support increases in funding for kidney research, innovation, and early detection. We asked for a substantial increase in funding for the CDC’s Chronic Kidney Disease Initiative plus increases on a par with other important diseases in the National Institutes of Diabetes, Digestive and Kidney Disease (NIDDK). While other major diseases have seen dramatic improvements in recent years, kidney disease outcomes, on the contrary, have gotten worse.

The team with Elizabeth Adkins, Rep. Foushee’s legislative. staffer.

Our team with Laney O’Shea, Rep. Jeff Jackson’s staffer.

With Gray Rixey, Sen. Thom Tillis’s legislative staffer.

With Jacob Dunklin, Sen. Ted Budd’s legislative staffer.

A Playful Homage to My (Remaining) Kidney

In honor of National Kidney Month, I try to do my part as an advocate–and a living donor–to spread awareness of kidney disease, kidney donation, and organ transplant. I’ve had a healthy respect for kidneys ever since I first accompanied my son to his dialysis sessions many years ago–before I gave him my kidney in 2006, of course. If, like me, high school biology class was not your favorite, reading about what kidneys do may make you run the other way–or at least stop scrolling. So, I offer here this playful homage to kidneys–in an updated blog post. I hope you read it through to the end and share it with anyone who would otherwise run the other way.

Like most people, I was born with two kidneys and they’ve served me well. Since 2006, the left one has been working in my son’s body and doing a terrific job. That’s the one that gets all the attention. So, at the beginning of National Kidney Month, I thought it only fair to devote this blog post to that unsung hero, my remaining kidney.

It (he? she?) has worked solo ever since its partner moved to my son’s body so many years ago. Is it lonely? Does it feel abandoned, I wonder.

I’m a bit ashamed to admit that she (yes, I’ve decided it’s a she) doesn’t even have a name. After an informal contest among friends and family, my son’s (formerly my) kidney was dubbed “the Comeback Kidney.”

But my righty has never clamored for attention or tried to claim the spotlight from her perch above my waist toward the back. She’s been doing a masterful job, taking up the slack ever since her partner upped and left, with nary a complaint.

Initially, as was expected, I lost 25% to 35% of overall kidney function. But my little fist-sized pal gradually got a little plumper, and my kidney function built up to a normal level. As I’ve written before, even if she hadn’t managed her own “comeback,” a slightly higher new normal for a living donor is just fine.

Not only did she rise to the task, in fact, she exceeded expectations. Filtering waste from my blood, reflected in creatinine level, is probably her biggest job. A “normal” creatinine reading for most women is under about 1.0. At my last check-up, mine was .81, enviable at any age. Even my GFR, a formula that uses creatinine plus age, sex, (no longer race!), and weight to estimate overall kidney function, is an impressive .76 (anything over 60 is normal). It’s common for anyone’s kidney function to decline with age, so at nearly 75 years old, I’m very proud of that reading.

If keeping toxins out of my blood were all that she did, I’d still be justifiably proud of her. But she does so much more. She keeps my blood pressure down, removes extra fluid, makes urine, balances nutrients, makes red blood cells to keep me from being anemic… I could go on. Think about it: she’s been doing all that alone. You’d never know it from my lab work, of course, which would be impressive for a healthy nondonor of any age.

Thank you for all that you do, righty! (True, it’s not the most original name, but I think I’ll use it till I can think of something more creative.)

I’ve never seen a lung-shaped swimming pool, have you? Or a pancreas bean? Other than the heart, can you think of any bodily organ that’s so recognizable and endearing enough to inspire cuddly plush toys? Obviously, there’s good reason for that honor.

For related posts, resources, and information on The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Righting Another Race-Based Handicap at Last

Critical wait times on national lists for a kidney–typically several years long–are finally being adjusted to make them more accurate and fair to African Americans. This move is all the more important because black people in the United States are nearly four times as likely as whites to have kidney failure.

I don’t think most people realize that until recently when you got your kidney-function blood test results, the same creatinine reading (level of waste products) was rated differently if you were African American. Let me illustrate with my own test results. A couple of years ago my blood tests showed a creatinine of 0.94 (higher than my usual since my donation but still fine for one kidney). Beneath the 0.94 was my eGFR (“estimated glomerular filtration rate,” or kidney function): 60. The 60 is just on the cusp of normal. Of course, as a white person, I was looking at the line that read “non-African American female.”

If I had looked instead at the next line–African American female–I’d have seen a 70 (completely normal). Note: same level of creatinine.

When the levels are lower, the differences can have serious ramifications for treatment approach because these are the numbers that categorize stage of chronic kidney disease. Ultimately, below 15 denotes kidney failure, meaning an imminent need for either dialysis or kidney transplant.

The eGFR formula had been in place in the United States since the nineties, based on a few characteristics, including muscle mass. Fortunately, in 2021, after the National Kidney Foundation and the American Society of Nephrology got together to look at the use of race in these calculations, their task force announced a new race-free calculation. Now GFR readings differ only by male and female.

Just think about the implications. The point at which someone is put on a transplant wait list, and their priority on that list, is based on numerous factors, including GFR. If patient A is listed with a higher kidney function–that is, seemingly less sick–despite the same creatinine, that naturally affects their wait time.

Now, as of January 5, 2023, in “an unprecedented move to correct racial inequity in access to kidney transplants,” all U.S. transplant centers are required to review their lists to see which black patients were listed based on the old, race-based formula, according to yesterday’s article in USA Today.

“It’s a restorative justice project in medicine,” said Dr. Martha Pavlakis, nephrologist and kidney transplantation committee chair at the Organ Procurement and Transplantation Network, which develops policies for transplant centers.

Given that the overall wait for a kidney is already tragically long (5 to 10 years or more), anything that unfairly misinterprets a patient’s kidney function has life-and-death consequences. These race-based formulas for interpreting kidney function have clearly contributed to the shamefully longer waits for African Americans, who make up about 35 percent of people on the wait lists (but only 13 percent of the U.S. population).

This is huge news for African Americans and for everyone concerned about health care inequities.

For related posts, resources, and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Thanksgiving Dinners and Donors

Every Thanksgiving at my house, we go around the table after dinner and talk about what we’re each thankful for–a fairly typical American tradition that for us started when my adult kids were little kids.The usual topics come up, of course: being together, good health, good news, good food. Naturally, one not-so-typical topic also has come up every year for nearly two decades: kidneys. So I decided to devote this Thanksgiving blog post to kidneys and living donation.

I’ll start. I am thankful for

my right kidney (aka Righty). My son, Paul, is thankful for my left (both are doing well, thanks). Righty has managed to give me what would be a solidly normal kidney function for someone my age with two kidneys–and she’s done it all alone!
the transplant team at the University of North Carolina Kidney Center that supported both of us skillfully and caringly throughout the donation and transplant process 16 and a half years ago.

So much has happened in the field of living donation since then, and prospective donors can now take advantage of options that didn’t practically exist in the early 2000s. So, even though my family didn’t benefit, I’m thankful that the recent donors I know and the would-be donors who have written to me in recent years can. Here are just a few of those options:

Paired donation—not around when I donated—enables someone who isn’t a match for their intended recipient to donate a kidney to someone else to enable their recipient to get another, better-matched one, when he or she needs it. Often they donate to someone they don’t know–a “nondirected donation.”
Expanded financial assistance for living donors–including nondirected ones–to cover lost wages and donation-related expenses like travel, childcare, and eldercare. In addition to organizations such as the National Kidney Registry and the Alliance for Paired Kidney Donation (see Resources), a big federal program that for many years covered only travel expenses–the National Living Donor Assistance Center (NLDAC)–has substantially expanded its financial assistance in the past couple of years. Thankfully, we managed without all that back then, but our situation was a best-case scenario in many ways.
State-level living donor protections in 28 states, offering benefits that range from basic job protections to paid leave for state employees to tax credits. The list is growing while the federal version gets tantalizingly close to passage.

Now it’s your turn. If kidneys and/or living donation is a big topic in your house too, you might want to reflect on these worthy items for thanks giving after you finish your pie. Happy Thanksgiving to you and yours!

For related posts, resources, and information on The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Contributor Spotlight: Emotional Challenges of Caregiving

Some people support living donors and transplant recipients not only on a practical basis but emotionally. Two of The Insider’s Guide to Living Kidney Donation‘s contributors are authorities on the subject. One is a licensed professional counselor, Kathleen Fitzgerald, whose clients often include families contending with the emotional fallout of kidney failure, transplant, or any serious chronic illness. The other, Sharon Williams, also has a professional perspective. She is a researcher who specializes in family caregivers for someone with a severe chronic illness.

Contributor Sharon Williams blows out the candles at a recent birthday celebration with family and friends.

Sharon also knows the subject firsthand, because for nearly 20 years she was a caregiver for her spouse while he was dealing with chronic kidney disease, liver disease, and later a transplant. In her chapter of the book, she explains that she eventually realized that her research hadn’t prepared her for the difficult emotional challenges of this kind of caregiving. She shares the valuable lessons she learned along the way. Spoiler alert: it’s wise to let the patient take the lead in planning how to proceed and be ready to support those very personal decisions.

Sharon has since transitioned to phased retirement, working roughly half-time until she retires from her current university position in two years. Today she enjoys spending time with family and friends, including her church family, “a blessing I treasure more and more each day.” Sharon also enjoy walks with her dog and dancing, especially line dancing.

Contributor Kathleen Fitzgerald counsels families facing emotional challenges of a health crisis.

Kathleen’s chapter describes the various ways that families contend with highly charged emotional situations related to health crises. She explains the diverse approaches people try–often unsuccessfully–and then offers helpful case studies of different scenarios, describing why some approaches were beneficial. These different perspectives will resonate with many readers–regardless of whether or not their family member is considering donation or transplant.

It all comes down to the undeniable truth that donation and transplant are far more than medical decisions and experiences. They touch families and friends in profound, multifaceted ways. The ripple effect extends far beyond the individual and even the family unit.

Be sure to read Sharon’s and Kathleen’s complete chapters. If you haven’t already ordered your copy of The Insider’s Guide, you can do so here.

For related posts, resources, and more information on The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Contributor Spotlight: Workplace Friends as Donors

Many people assume that you have to be a blood relative to donate your kidney to someone. And in the early decades of living donation, that was pretty much the case. Family members are still the largest single group of living donors, but the percentage of unrelated donors has been growing. This contributor spotlight highlights two of our book’s contributors who learned firsthand that a donor might actually be someone you know from work. (Afterward they often do feel like family.)

One of our contributors–Linda Watson–chose to donate to a colleague friend (my co-author, Betsy!). Another, Joe Reichle, instead received his kidney from a former student’s spouse.

Linda Watson and husband, Joel, on the Georgetown waterfront in Washington, DC

Linda had worked with Betsy for years before she learned how serious her friend’s health problems were. Still, as Linda relates in her chapter, like many people back in 2003 she didn’t realize that she herself could possibly be eligible to donate. But when she saw several other colleagues step up to be tested, she knew that this was what she wanted to do.

Linda explains that her decision also coincided with a time in her life when she very much needed to “do something life affirming.”

Receiving Linda’s kidney enabled Betsy to get off dialysis; produce urine once again (“I never thought I’d get so emotional about seeing a bag of urine,” Linda writes, describing her first visit to Betsy’s hospital room); and return to her position at the university full time. (About 17 years later Betsy would need another transplant–while our book was in production, in fact. Happily, she’s back to working full time again.)

Today Linda, who is in phased retirement from her work in speech and hearing sciences, clearly leads a full life. Besides gardening; traveling with her husband, Joel, albeit limited by COVID; singing in the choir and participating in other activities at her church, she recently tried her hand at voice lessons. She looks forward to traveling more extensively as the pandemic eases.

Joe Reichle has polycystic kidney disease, like many in his family, several of whom died relatively young. He begins his chapter by explaining that as a young man, he’d always figured that that would be his fate too. Instead, Joe, a retired university professor in the Midwest, led a normal adult life for 30+ years before the word transplant ever surfaced.

When Joe learned that the wait for a deceased donor kidney could be five years, he considered a live-kidney transplant in the hope of getting a kidney before he needed dialysis: a preemptive transplant. Knowing too that a living donation typically has a better outcome, he reluctantly let it be known that he needed a transplant (“I’m a person who doesn’t like to ask for things”). Joe relates in his chapter how surprised and moved he was to see colleagues and former colleagues seek him out, wanting to donate to him.

Many would-be donors were eliminated, and when a former student volunteered but later became pregnant, her husband fortunately volunteered to donate in her stead. Since his transplant, Joe says, despite other health issues, “for the most part, my health has been very good.”

He and his wife enjoy a comparatively quiet life in northwestern Michigan on East Grand Traverse Bay, where they enjoy photographing the wildlife, which includes bald eagles, red foxes, deer, chipmunks, raccoons, and the occasional bobcat.

They are less sedentary, he says, since the arrival of a lively two-year-old weimaraner-lab mix, named Rosie, who enjoys the water. Joe also still “dabbles” in intervention research for children with communication delays.

Even though Joe’s donor, Robert Drager, and family live far away in Pennsylvania, the two families often shared special occasions in the first several years and have stayed in touch.

Nearly 20 years post transplant, Joe has some words of advice to anyone considering a transplant, which he calls “one of the best decisions that I have made. Your quality of life will be significantly enhanced,” he says. And, as for your family, “they will spend less time worrying about you.”

We think those are both awfully good reasons.

For related posts and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Kidneyversary: 16 Years and Counting

In case you’ve only recently discovered this blog, you should know that I donated my kidney to my adult son, Paul, on June 27, 2006 (he shared his reflections in a 2019 post). This week we arrived at the Sweet 16 mark! Both of my kidneys, by the way, are still going strong, faithfully doing their job–just in different bodies.

The Comeback Kidney, as “he” was named, is healthy, and Paul’s overall kidney function is stable. Mine, happily, is perfectly normal, particularly considering that people’s kidney function declines with age, and I just turned 74. The other important measure is for creatinine–to show how well the kidney is filtering toxins–and I’m proud to say that mine is an impressive .84 (under 1.1 is normal for women).

So, 16 years out from donation, even though I’m a lot older than I was then, I’m very healthy and active (read: I walk and hike). I was never athletic, but lots of living donors are. If you’re a potential donor and have any concerns about donation cramping your lifestyle, learn about the Kidney Donor Athletes. They enjoy ultra-marathons, triathlons, and in March they celebrated World Kidney Day by climbing to the top of Mt. Kilimanjaro, Africa’s highest peak!

Our kidney celebrations are a bit more mundane. We went out to dinner to honor the occasion, as we do every year at this time. (The notable exception was, of course, 2020, when we “celebrated” the best we could in our front yard.)

For related posts and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.