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.

Mr. Smith–uh, Ms. Offen–Goes to Washington!

If you’ve been following this blog for awhile, you know that I’ve had many many meetings “on Capitol Hill” as a kidney advocate. Productive days filled with back-to-back meetings with legislative staffers, even some members of Congress–as part of the National Kidney Foundation’s Kidney Patient Summit and the American Society for Nephrology-led Community Advocacy Day. Every single one of them, alas, has been on zoom or the equivalent.

It all began for me when NKF accepted me as an advocate in fall 2019. I was thrilled to be invited to participate in the upcoming summit on Capitol Hill in March 2020. I had my plane tickets, my hotel reservation, and my fundraising page. As the date approached, I got more excited–and then…well, that’s of course when the world turned upside down. The Summit was cancelled just a few weeks before it was supposed to happen. I took part in the virtual summit held that fall, and they then scheduled an in-person one for March. That too was cancelled.

Fast forward to 2023. Once again I’ve been invited. I’m even going to be the group leader this time for our foursome from North Carolina. My bags are packed and I have my tickets plus a few new touches: a CLEAR app on my phone to show proof of vaccination and negative covid test. I’m chomping at the bit. (Of course, I’m nervous, too, worrying about going from office A to office B without getting delayed or lost.)

Interestingly, I’m not that uptight about the meetings themselves because I learned a long time ago that it’s the personal stories that matter most. As NKF’s Lauren Drew always points out, staffers and members of Congress sit in meeting after meeting with paid lobbyists and hear facts and statistics all day long. What will stay with them at the end of the day is not the numbers but the personal, emotional stories.

Staffers and lawmakers may not remember the fact that 37 million Americans have chronic kidney disease and the vast majority don’t know it yet. But when they meet a woman whose life was forever changed when her diabetes spiraled out of control and led to kidney failure–and hear her tearfully describe the long years of waiting for “the call” that a kidney is available–that they’ll remember.

Will they remember how many transplants were performed last year with living donors versus deceased donors? Probably not, but when they meet a healthy living donor who was repeatedly turned down or overcharged for life insurance just because of being a donor–that is, discriminated against for stepping up to save a life–suddenly supporting the Living Donor Protection Act–a noncontroversial, bipartisan effort–should become a no-brainer.

They may think that dialysis is a conveniently available option for everyone until they hear from someone who had to take two buses and spend 2 hours each way to get to the nearest center. Maybe that will help persuade them to support the Home Dialysis Act to expand access to and support for home dialysis for those patients–particularly in rural areas–who want it.

Will they remember how much federal funding goes toward kidney disease research? Perhaps not, but when they’re told unequivocally that investments in research and early detection will save Medicare millions of dollars down the road, they just might consider increasing appropriations.

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

Happy to Pay It Forward

Recently, I was excited to receive a very happy update to a long, frustrating quest for a kidney. Stormi Murtie, a North Carolina woman who had contacted me last year when she learned of our book, had been tirelessly trying to get a kidney for a loved one to whom she could not donate. She’s now getting ready to pay it forward by sharing her healthy spare kidney with someone else. I thought reading her moving story might give hope to anyone who has ever despaired of getting “the call.” (I took the liberty of adding emphasis to a few passages that seem particularly important or instructive.)

Stormi writes:

Two years ago my then 32 year old firefighter step-son Brecon contracted a very rare life threatening condition called Goodpasture Syndrome. It did not kill him, but it killed his kidneys. Left in total renal failure, his new normal was 4 hour dialysis sessions 3x’s per week. His body could not tolerate home hemodialysis, so after his work day ended he would spend hours at the dialysis center. It was exhausting. With us in NC and Brecon in FL my husband made countless trips back and forth and we learned everything we could about renal failure, antibodies, point systems, hospital protocols, kidney transplants–and living kidney donors. From books, articles, organizations, we poured over every snippet of info we could. The process can be extremely complicated, and feels frustratingly slow.

We learned that much of the info we received was from a pre-Covid system and did not apply. The medical community had changed and with it many of the systems previously in place were stretched very thin or no longer applicable to our situation. I came to understand the incredible need for living donors of all ages, and I was committed to being healthy enough to be approved.

Slow motion forward to August 2022: after extensive medical appointments, a new lifestyle, testing at Shands in Gainesville, and 25 lbs lighter, I was approved to be a donor in a “paired donor exchange” program.

A clearly happy Stormi and her undeniably healthy-looking stepson, Brecon, after his transplant.

While waiting for the computer to uncover any viable options, Brecon was also on the waiting list at 2 Florida hospitals for a deceased donor kidney, and multiple friends and family were being tested to see if they were a match. Wherever a viable kidney could be located first, we were casting as wide a net as possible. Since he was highly sensitized, finding a match was very difficult. Suddenly and unbelievably, after many false starts, on November 7, 2022 Brecon received that call. And after waiting all day for a thumbs up or down, he received a kidney from a selfless family of a deceased donor. He is currently doing well and we are so hopeful he continues to thrive with his new kidney. After two years, the very first trip Brecon was able to make was to us.

Now: It is time for me to pay it forward. Details are still in flux but I have also received the call that a chain donation is on the table. With me as the altruistic first cog in a chain of donations, three wonderful people are in queue to finally receive their transplants (nationwide, over 93,000 are on the kidney transplant waiting list).

One day soon, multiple surgeons, donors and recipients will converge in Gainesville, and like a fine-tuned performance, an intricate ballet of donors and recipients, following multiple operations, lives will be changed. I am honored to be able to donate my kidney to help a stranger in need, to ultimately pay it forward just like the selfless donor family did for Brecon.

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.

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.

New Year’s Resolutions

True, new year’s resolutions tend to fall by the wayside after a few months for most people, but we keep making them anyway. Maybe this year will be different. I looked at the resolutions I posted last year at this time and they’re still good, so please give them a try. Whether you have one kidney or two, they can help keep you and your (potential) transplant recipient healthy. Here’s to a happy, healthy, and peaceful new year!

For related posts, resources, and information on my book, The Insider’s Guide to Living Kidney Donation,

please be sure to explore the rest of my website.

Good News and Bad News

If you’re anything like me, you’ll want to read the bad news first. (I’ve never understood why anyone would want to hear good news first, feel terrific, only to then be brought back down and left with sad or depressing news.)

Photo by Miguel u00c1. Padriu00f1u00e1n on Pexels.com

So, first the bad news:

The Living Donor Protection Act, which was first introduced in 2014, still hasn’t crossed the finish line on its way to becoming law. It would provide basic protections against discrimination by insurance companies, as well as job protections for taking time off work to donate. Remember the latest big push during the meetings with lawmakers we had in the fall? We were SO close to finally getting this thing passed. I’m not sure if it’s still technically possible, but it’s as good as impossible. That means we start all over in the next session of Congress. We”ll also need a new House sponsor because Rep. Jaime Herrera Beutler wasn’t reelected.

Now the good news!

Even though it didn’t make it into law, the LDPA had the most cosponsors ever: 158 in the House and 43 in the Senate. That has to translate into increased bipartisan support in the next Congress. In other words, we shouldn’t need to start from scratch. They all know about the act now, and, given that nearly 100,000 people in this country are waiting for a lifesaving kidney, most lawmakers understand its importance.

$$$ for Kidney Disease Awareness and More: Congress just released its final appropriations bill that includes substantial increases in funding for federal programs that promote kidney disease awareness, education, and research. Sure, we need more living donors and must remove obstacles to donation, and yes we need an implantable artificial kidney, but ultimately the best way to meet the critical need for kidneys and save lives by reducing kidney failure, is to PREVENT chronic kidney disease in the first place. So, education and research are absolutely essential.

The Immuno Drug Bill (aka Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act), which finally passed at the end of 2020, goes into effect very soon: January 1, 2023. Believe it or not, this one had been kicking around way longer than the LDPA: 20 years! The kidney community has been fighting to change the law that arbitrarily cuts off Medicare coverage for transplant recipients who don’t otherwise qualify for it–for example, those under 65– after 36 months post transplant. The Immuno bill now ensures that people with no other health plan to pay for their critical antirejection meds will be able to have these drugs covered for the life of the transplant.

Eligible individuals can start applying for the Medicare immuno drug coverage right now. If you have questions, contact the toll-free help line at 855.NKF.CARES (855.653.2273) or nkfcares@kidney.org .

For related posts, resources, and information on my book, The Insider’s Guide to Living Kidney Donation,

please 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.

Why Is Living Donation So Important?

According to polls, the vast majority (90%) of Americans favor organ donation after death–yet, only about 60% are registered to be organ or tissue donors.

Just curious, what percentage of people in the United States would you guess die in such a way that traditional organ donation is possible? A third? A fifth? Not even close! Less than 1 percent: typically, in a hospital following an accident. So, no, not at home in their beds, not on impact in a car crash, often not even after a slow death from myriad diseases.

That little heart on your driver’s license is just one way to make it known that you want to be a donor. It takes just a minute to register online at many sites.

Traditional organ donation 101: When a dying person has been determined to be brain dead—no activity, no chance of survival—but the heart is still beating, blood is flowing to their internal organs. Once the organ has been removed from the blood supply, the sooner it’s placed in the recipient’s body, the better. With luck it’s off the blood supply for only a few minutes or hours. When it’s necessary to put it on an airplane, that interruption may last several hours—technically, 24 to 36 hours is acceptable, but the sooner it can be hooked up to the recipient’s veins, the better.

So most of the 100,000 people on the national waiting lists may languish several years–5 to 10 is not uncommon–before they receive a lifesaving organ (most of them are waiting for a kidney), and thousands don’t get one in time. Clearly, we need more people to be registered donors.

So, absolutely, register to be an organ and tissue donor (organdonor.gov is one of many sites where you can register in just a couple of minutes), and tell your family of your desire (and then urge them to do the same). But even if everyone complied, we’d still have an organ shortage because of that 99% that can’t be used in traditional donation.

That’s where live donation comes in. Not only does it add to the pool and shorten the wait, it even improves the outcome for most transplant recipients. And we need to remove obstacles for potential donors so that more people will consider being living donors. Tell your representatives–in your state and nationally–to support the Living Donor Protection Act and to increase funds for financial assistance for living donors and for early detection of chronic kidney disease.

An important health crisis as urgent and daunting as an organ shortage deserves more attention, more funding, and a meaningful commitment to finding creative solutions.

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.

Still Advocating After All These Years

Last week I had a day of back-to-back virtual meetings with congressional staffers–plus one congressman!–to talk about the Living Donor Protection Act and kidney health in general. Hard for me to believe that this was my fifth such event. Unlike most of the others I’ve been a part of, this one represented a partnership of 22 kidney-health organizations–including the National Kidney Foundation, of course–led by the American Society of Nephrology.

The good news: The LDPA is closer to being passed than at any time since it was first introduced in 2014.

The bad news: With Congress adjourning soon, if it doesn’t make it across the finish line now, we’ll have to start all over in the next session of Congress. (That thought is not only depressing but overwhelming because of logistical issues that I’ll save for another post.) Consequently, our “ask” was not just for cosponsorship of the bill by those members who hadn’t yet signed on but for help from all of them to get the bill to the floor.

As I related here after one such day of meetings, I’ve come to understand what the trainers have told us repeatedly: it’s the personal stories that will stay with and move a staffer or member of Congress. They’ve had a gazillion meetings and heard all the appalling numbers before: that nearly 100,000 Americans are waiting for a kidney and at least 13 die every day because they didn’t get one in time. They know all that on an intellectual level. It’s not the same as hearing what it means for a mother to see her son grow more and more listless and depressed as he struggles through long months of dialysis.

I was joined by an impressive group of fellow advocates who represented an interesting range of perspectives: Brenda Johnson, from the Veterans Transplantation Association, who told of veterans struggling with kidney failure or having to fight with insurance companies to get life insurance if they donate; Lauren Drew, NKF’s very savvy governmental affairs director, who’s been my mentor for such meetings since I first became a Kidney Advocacy Committee member; Dr. Hostensia Beng, a pediatric nephrologist, who shared heartbreaking stories of parents trying desperately to find a kidney donor for their young child; and Dr. Gentzon Hall, a nephrologist/genetics researcher at Duke Medical Center (just down the road from me), whom I’d met last year when we were on the same advocacy team. He emphasized the dire need for more research funding.

The highlight of the day had to be our meeting with Rep. Gregory Murphy, a former transplant surgeon. He knows firsthand how transplant transforms lives, and he promised not only to cosponsor the Living Donor Protection Act but to do all he could to help move it across the finish line before Congress adjourns.

It’s soo close. C’mon, LDPA!

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.