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.

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.

Donors Don’t Get Paid, But the Rewards Are Still Real

Every once in a while, I mindlessly scroll through my website stats to see how a particular blog post or month of posts fared. I was curious when I noticed “Best Views Ever” (in more than three years): November 28, 2020. Hmm, what might that have been, I wondered. Naturally, I had to check it out.

I was delighted–and honestly, not too surprised–to see the title: “Kidney Donors Don’t Get Paid, But the Rewards Are Very Real.” I remember that a lot of living donors told me they’d read it while nodding in agreement, and many people pointed out that even though these things were pretty obvious to donors, transplant centers usually don’t give them enough weight. I just reread the post to see how it holds up nearly two years later. I can defend every word, so I’ve decided to reprint it here (rather than link to it) so it will have today’s date–and not be limited to kidney donors:

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In previous posts, I’ve described some of the enormous benefits of a live vs. deceased-donor kidney transplant for the recipient, but did you know that there are many very real benefits to the living donor, too? For family members or couples, the benefits are nothing short of dramatic. And I’m not just talking about feel-good points.

For a family, the practical benefits can be as concrete as money in the bank. A spouse or parent whose ability to work was limited by dialysis for a long period may gradually be able to resume a full-time schedule–maybe even launch a new career. That can substantially improve the family’s ailing financial health as well.

For family caregivers, particularly, donating a kidney to the loved one you’ve been caring for can bring huge relief. The reduced stress and no doubt improved sleep can have considerable benefits in energy, mood, overall outlook, and, as a result, even job satisfaction.

Then there’s the extraordinary motivation of saving a loved one’s life or turning it around. A living donor I know who’d donated to her husband described her decision as “purely selfish. I wasn’t about to lose him,” she insisted. I know the feeling.

Seeing someone you love–in my case, my adult son–who’d been pale, weak, and listless for months or years gradually become their old self again is pretty powerful. And a donor whose partner wasn’t interested in intimacy during a long period of ill health may see a positive change in their relationship.

Want to improve your social life? Give your partner a kidney! Couples who have been uncomfortable for a long time about socializing—whether because of physical obstacles or simply due to the dialysis patient’s lack of energy or interest—may soon be able to enjoy evenings out with friends or family.

For anyone who donates a kidney—even to someone they don’t know—the benefits are nearly universal:

The feeling of personal gratification is indescribable. Knowing that you’ve helped give someone—anyone—a shot at a healthy, productive life—is an extraordinary feeling. Living donors in studies report a boost in self-esteem, and 9 out of 10 say they would do it again. Through donor-support groups I’m active in on Facebook, I’ve been struck by how life changing the experience has felt for most of us, including the few who have later had complications or whose recipient didn’t fare well for as long as expected.

A fascinating journal article inspired this post. The researchers argue that for the above reasons and more, transplant centers considering a potential donor’s relative risk might do well to acknowledge and give weight to the undeniable tangible benefits for certain donors.

“Van Pilsum Rasmussen, S. E., M. Henderson, J. Kahn, and D. Segev. “Considering Tangible Benefit for Interdependent Donors: Extending a Risk–Benefit Framework in Donor Selection.” American Journal of Transplantation 17, no. 10 (Oct. 2017): 2567-2571.

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.

New Year’s Resolutions for Donors and Would-Be Donors

Whether you’re being evaluated as a living donor already, or just thinking about it, here are a few suggestions that will benefit you and your kidneys–wherever they happen to be.

1- Take good care of yourself (and your kidneys).

–Exercise regularly.

–Get plenty of rest.

–Stay hydrated.

–Eat a healthy diet.

2-For your safety and your recipient’s, be sure to get your Covid booster as soon as you’re eligible. Transplant recipients and anyone else who is immunocompromised, such as people with cancer or autoimmune diseases, can’t count on full protection from the vaccine. It’s all the more important that the rest of us add that protection.

3-Avoid ibuprofen and other NSAIDs—they’re hard on the kidneys for anyone—particularly important if you’re a donor or recipient.

4-Learn about kidney function. Kidneys are amazing!

5-Read up on all facets of kidney donation—for example, order a copy of The Insider’s Guide to Living Kidney Donation.

To all of you and your loved ones: a happy and healthy new year!

Why Not Just Wait for a Deceased Donor? Here’s Why

According to polls, about 90% of Americans say they favor organ donation, but only about 60% are registered 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. The answer is “less than 1%”: 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.

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 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 after you die and tell your family of your desire (and then urge them to do the same). But even if everyone complied, we’d still have a kidney shortage because of that 99% that can’t be used in traditional donation.

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.

Relax, Living Donors: Your Kidney Function Is Probably Just Fine

Anyone who’s been reading this blog for awhile knows that I periodically post in frustration about the subject of donors being needlessly upset when their kidney function appears slightly lower than “normal.” It’s usually because their provider has wrongly concluded that the donor thus has stage 2 or 3 chronic kidney disease. That’s not merely my opinion–I have no medical credentials–that’s according to respected medical writings on the subject.

The eGFR (kidney function) scale they’re referencing is relevant mainly for people with two kidneys who may be showing signs of kidney disease.Well-meaning but uninformed providers–sometimes even nephrologists (kidney specialists)–often forget that a healthy donor is probably registering lower kidney function simply because he or she has one kidney.

Donors do lose kidney function, but the remaining kidney gets plumper and takes on some of that burden; their creatinine level (toxins in the blood) may be borderline for a few months but then typically stabilizes at a perfectly acceptable level. Mine, for example, 15 years after donation, is fine even for someone with two kidneys.

I recently heard of other examples of confusion on this point, so it bears repeating: a slightly higher creatinine and a slightly lower kidney function in an otherwise healthy living donor is just fine!

Transplant teams need to do a better job of preparing their donors for the likelihood of their having a “new normal.” Equally important, teams should routinely alert a donor’s PCP to this eventuality from the start–that is, when the donor leaves the team’s care soon after the donation.

Some frightened donors have run to consult a nephrologist, worried that they had developed chronic kidney disease. (I’m not suggesting that there are never instances of a living donor developing kidney disease, but those are rare. We’re talking here about a donor who is in good health and showing no signs of kidney disease.)

In Facebook support groups, even well-informed donors often describe having had to get a letter from the transplant team to “convince” their provider that the donor knew what he or she was talking about.

If even health care providers are not fully informed, is it any wonder that donors–not to mention the general public–are not fully informed about living donation? Given the urgent need for more living donors, our health care system and the kidney community need to do a better job of raising awareness about kidney disease and donation.

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.

Did You Know? Pass It On!

Whether you’re a donor, a potential donor, or a kidney patient looking for a donor, here are a few intriguing facts everyone should know about living donors:

More than a third of living kidney donors are over 50 years old (I was 58 when I donated to my son 14 years ago), and the proportion is rising.

That’s me, right before a memorable 2018 trip to “the Bean” in Chicago to help set a Guinness World Record for largest gathering of living donors.

2. Most living donors, like me, say they would do it again (often adding “in a heartbeat”).

3. Many living donors were inspired to donate to someone they didn’t know because of an eye-opening article they read or a moving Facebook post that resonated with them.

4. Nondirected donors–empathetic people who choose to donate to someone they don’t know and may never meet–now represent about 3% of living donors in the United States, but the percentage is on the rise.

5. Nondirected donors can save multiple lives by initiating a swap (aka a paired donation, as a friend did in advance for her son)–or even a chain of transplants. If Donor A isn’t a match for their intended recipient (Recipient A), but the nondirected donor is, he or she donates to Recipient A, and Donor A donates to someone else who wasn’t a match for their recipient, and so on.

6. Most living donors (in an informal survey) own rescue pets. (A shout-out to WELD San Diego for that interesting statistic!)

7. And, of course, most living donors are women (another shout-out to WELD, which, by the way, stands for WoMen Encouraging Living Donation–yes, they now include men in their growing ranks).

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.

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.