Why You Should Know More About Your Kidneys Than You Do

The following article, which I wrote, appeared originally in Wise & Well, a Medium.com publication, on Feb. 13, 2025.

If you saw recent headlines about clinical trials for transplanting modified pig kidneys into humans, you may have wondered why scientists would even think about doing such a thing.

The simple reason is that there aren’t nearly enough human kidneys available, living or deceased, to meet the growing need. About 800,000 people in the United States have kidney failure. About 37 million people — one in seven — in this country have chronic kidney disease, meaning that they’re slowly losing kidney function. The real tragedy is that 90% of them don’t know it.

Simply knowing the level of your kidney function–that is, how effectively your kidneys are working–could save your life.

Chronic kidney disease is usually asymptomatic until it’s progressed to kidney failure and sometimes not even then. Often it’s discovered when someone gets a screening at a Kidney Walk event to raise awareness of kidney disease. Or someone may go to the emergency room for a possibly unrelated problem.

If the kidneys are failing, that person immediately is put on dialysis, a process that removes toxins and excess fluid if the kidneys can’t do the job. The patient will need dialysis — but, ideally, a new kidney — to stay alive.

If kidney disease is caught in the early stages, however, the condition can frequently be reversed through healthful eating, exercise and possibly medication. In any case, disease progression typically can be slowed with proper treatment. Once the disease reaches kidney failure, though, it‘s too late to turn it around.

Contrary to popular notions, kidney disease can strike anyone, not only older people or those with diabetes or poor eating habits.

When my family got the news

My son was diagnosed with kidney disease when he was in college, and the news came out of left field for us. We did not have a family history of kidney disease, and he had none of the usual risk factors (diabetes, hypertension, obesity). His condition, discovered in lab work, was the unexpected and devastating result of a strep infection.

We were told that because he was young and otherwise healthy, the disease might never progress to kidney failure; in any case it could take many years. His condition was monitored for a few years, and then, inexplicably, his kidneys failed just months after his college graduation.

He spent 20 long months clinically depressed as he underwent in-center dialysis, until I could donate my left kidney to him. Eighteen years later, the one I gave him is still going strong. My right one still gives me normal kidney function–that is, a GFR, or glomerular filtration rate, of 60 or higher; mine is 76. At nearly age 77, I have an active, healthy life, as do most living donors.

Before my son’s initial diagnosis I knew nothing about kidneys and kidney disease. I was not alone in my lack of awareness. As an active kidney donation advocate for almost a decade since then, I’ve met dozens of fellow living donors and even more transplant recipients. Interestingly, almost all of them say that they too knew nothing about this all-important organ until the disease affected their own family.

Don’t wait till you have a personal connection to learn about your kidneys and kidney transplantation.

A Quiz

How well are your kidneys functioning?

Chances are good that you don’t know this extremely important piece of health information. If that’s the case, ask your doctor to check ASAP so you can start taking control of your health care. All that’s needed is a simple blood test.

Now test your knowledge of some basic kidney-related facts. True or false?…

1. More than 100,000 people in the United States are waiting for an organ (most of them for a kidney) from a deceased donor.

True.

The number currently waiting for a kidney is about 90,000. Not every patient is a candidate for a transplant, depending on their condition and comorbidities. About 27,000 kidney transplants — from both living and deceased donors — were performed last year. That obviously leaves a huge gap.

Most of the people with kidney failure are on dialysis.

2. For patients with kidney failure, dialysis is a simple, comfortable treatment that can replace all or most of normal kidney function.

False.

Dialysis is not a substitute for a new kidney; it provides only about 20% of normal kidney function. The process also exacts a heavy toll on the body: although many kidney patients live on dialysis indefinitely, the average survival rate after five years is less than 50%.

For most people on dialysis, the quality of life is very difficult. Patients are tethered to a machine for hours at a time at least three days a week. After each session they typically feel fatigued for hours. Depression is common.

Some people adjust better to dialysis than others, particularly if they can do home dialysis relatively comfortably. That usually entails overnight treatments that may enable them to have a normal work schedule.

3. Most people in kidney failure have to wait several weeks to get a lifesaving kidney.

False.

Most wait several years for a call that an appropriate deceased-donor kidney has become available, depending on where they live, their blood type, their condition, and other factors. It’s not uncommon to wait 10 years in some states. More than a dozen people die every day because they didn’t get one in time — or they are removed from the list because they became too sick for a transplant to be feasible.

If a person finds a living donor, however, the wait can be dramatically shortened to a matter of months, the transplant can be performed at an optimal time for both donor and recipient, and the recipient can be removed from the long national waitlist, making the wait that much shorter for everyone else on the list.

An added bonus: Live-donor kidneys typically have a better outcome and last twice as long on average as one from a deceased donor.

4. If I’m registered to be an organ donor after I die, I know that my organs will save someone’s life.

False.

Currently, about 58% of Americans are registered as organ donors even though more than 95% are said to favor organ donation. Signing up is extremely important, and we need to increase that percentage (sign up here). Even so, however, less than 1% of people die in such a way that their organs can be donated (typically in a hospital on a ventilator, once someone is brain dead, to keep the heart pumping blood).

5. We have two kidneys and we need both for good health.

False.

Most of us have two kidneys, but many people are born with just one kidney and usually live healthy productive lives. Sometimes they don’t even know they have only one. That’s why living kidney donors, like me, gradually regain normal kidney function as the remaining kidney takes on much of the work of its former mate.

6. Living donors must be a biological relative of the person to whom they want to donate their kidney.

False.

That has historically been the case (I am), but it’s less so in recent years. Increasingly, spouses, partners, friends and neighbors — even strangers — are choosing to donate. Thanks to improved antirejection medications, you don’t need to be a so-called “perfect match” at all. However, you do need to be the same blood type for starters.

Even that criterion is no longer a deal breaker when there’s an otherwise eligible healthy donor. Thanks to the practice of paired donation, an incompatible donor and recipient can “swap” with another mismatched pair to find a good match. The National Kidney Registry, for example, has a huge computer database to help potential recipients find the best possible match among potential donors.

7. You have to be young to be a living kidney donor.

False.

I was 58 when I donated, and I know people who donated in their mid-70s. What’s most important is the health of the donated kidney and the potential donor’s overall health, to ensure that donation will not jeopardize the donor’s own health and quality of life.

8. Donors need to take kidney-related medication and restrict activity for the rest of their lives. And they can’t drink alcohol.

False.

Donors should simply eat a healthy diet, stay hydrated and exercise regularly. Because alcohol is processed through the liver, not the kidneys, there are no kidney-specific cautions concerning alcohol. Most living donors have an active lifestyle. Many even run marathons and some have climbed mountains. (I’ve never been athletic but I do Zumba twice a week — and it’s not Zumba Gold!)

9. Living donors can get paid for donating their kidney.

False.

The recipient’s insurance pays for the donor surgery and evaluation, and several organizations will now reimburse donors for related expenses such as lost wages, childcare and eldercare, transportation and lodging if applicable. However, direct payment for donating an organ is illegal in the United States.

In an effort to dramatically increase the number of living donations, which has remained static for many years, there is a growing movement to change the law. The End Kidney Deaths Act, which would provide nonrefundable federal tax credits for nondirected donors–that is, donors who do not have a specific recipient in mind–was introduced in the last session of Congress.

10. If a celebrity or millionaire needs a kidney, he or she can go to the top of the waitlist for a deceased donor.

False.

No one can break into the line. The waitlist doesn’t work that way anyway. It’s managed by the Organ Procurement & Transplantation Network, or OPTN, a public-private partnership that links donation professionals in the United States. Deceased-donor kidneys are allocated based on a highly complex system that considers blood and tissue match, how long someone has been on dialysis, the kidney patient’s condition, geographic location and myriad other factors.

I hope this has piqued your interest in kidneys and organ donation. Start by finding out your own kidney function number. If you want to learn more about these important topics, here are a few respected websites:

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

New Year’s Resolutions No Matter How Many Kidneys You Have

Every year before I make new new year’s resolutions, I look back to see how I did on last year’s. Alas, they’re almost always still relevant. I don’t think I’m unusual in that respect. I know that in a few weeks, for example, my Zumba classes and the workout area of my gym are going to be jammed. I used to be alarmed about overcrowding but soon saw that in a matter of weeks, the crowds invariably start to thin, and by late February they’re always back to near-usual levels.

So, once again I’m dusting off my old new year’s resolution blog post with a few updates. They’re relevant for everyone–if you’re a donor or never plan to be one.

Whether you’re already being evaluated as a living donor, 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). That means

–Exercising regularly. My friends all seem to like pickle ball, but I’m sticking with Zumba and strength training.

–Getting plenty of rest. Alas that’s a hard one for many of us. We can at least follow the simplest rules: no screen time a couple of hours before bedtime, no late meals, and avoid caffeine and alcohol late in the day. Also be sure to factor in some quiet downtime before bed.

–Staying hydrated. This one was reinforced for me just recently when I had a scare about my kidney function.

–Eating a healthy diet. Mostly that means a balanced diet with fresh foods–no extremes on any component. And avoid ultra-processed foods!

2-For your safety and your future recipient’s, be sure to get the latest Covid booster. Many people who were vigilant about that earlier have slacked off, but Covid is still around. The boosters are still important! Also, transplant recipients and anyone else who is immunocompromised, such as people with cancer or autoimmune diseases, can’t count on full protection from the vaccines. It’s all the more important that the rest of us add that extra layer of 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 and get yours checked. 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!

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

“Ms. Smith” Goes Back to Washington

Last year at this time I excitedly announced here that I’d be going to Capitol Hill–in person!–for legislative meetings as part of the National Kidney Foundation’s Kidney Patient Summit. Because of the pandemic, the previous several summits had been virtual–important, productive, yes, but no substitute for the real thing.

I surprised myself by writing that though the logistics of getting from point A to point B, and so on, made me nervous, I realized that the actual meetings didn’t phase me. I explained that multiple trainings and meetings had driven home the message that personal stories of kidney donation and transplant are what make the biggest impression on legislators and their staff.

Last year’s team: Necole & Dre Roundtree, me, Alan Levy.

I’ve been telling mine (about donating my kidney to my adult son) for years to anyone who’ll listen.

This year I’m happy to say I’ll be going back to Capitol Hill for another in-person summit. This time I’ve been invited to also participate in a separate smaller group of advocates for a “series of deep-dive policy discussions” before the summit begins. I’m very excited to be honored with a seat at the table to consider critical issues, such as the status of the nationwide allocation system for deceased-donor organs in the wake of recent reform legislation, obstacles in furthering legislation to improve access to home dialysis, and the increased attention to addressing rare kidney diseases.

Stay tuned for more information.

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

Kidney Vouchers Are Even Cooler Than You Thought

My last post, “Kidney Swaps and Vouchers and Chains, Oh My!” got a very positive reaction. It was a real feel-good story about a living donor I know who made a new kidney possible for her son even though she couldn’t donate to him directly, thanks to a voucher system. Several people outside the kidney community were blown away by the idea of vouchers, which is part of the National Kidney Registry’s advanced donation program. Not surprising—it is pretty cool. I realized though that I hadn’t explained some of the amazing ramifications of a voucher system.

I’ve heard many living donors who’ve given to a friend or acquaintance–or even someone they didn’t know–report that their families were very upset with them. Can you imagine how shaken these donors were to encounter not just concern but sometimes outright anger as they contemplated the most selfless act of their lives? What if your mother or I need one? What if one of your kids ever needs a kidney (often asked of childless couples and unattached individuals)?

The donor’s answer usually was that they felt compelled to respond to someone’s very real need now and couldn’t refuse to help that person because of a what-if that might never occur. Many of these donors say they felt confident that an equally generous person would step up at such a time of need. One African American woman I was on a panel with recently said because live donation is still uncommon in the black community, her mother was particularly uncomfortable with the idea of her donating to someone she didn’t know. She stopped her mother’s protests once and for all, though, by asking simply, “If I were the one who needed a kidney and had no family donor, wouldn’t you want someone to come to my aid?”

The young man I wrote about in my last post was fortunate to get his live-donor kidney soon after he needed it, just a few months after his mother’s donation. Vouchers can be redeemed years, or even decades, after the donation if they’re not needed right then.

I remember reading about a healthy man in his 60s whose granddaughter had kidney disease and would probably need a kidney transplant in a few years. He feared that he might not be healthy enough to donate by then. With a voucher system, he was able to donate soon to improve the child’s chances of getting a live kidney if and when she needs it. There are no guarantees that a good match will be available at that point, of course, but having the voucher would definitely make her wait much shorter.

Photo by u041fu0430u0432u0435u043b u0421u043eu0440u043eu043au0438u043d on Pexels.com

So potential living donors who encounter their families’–or their own–troubling “what if” questions, actually have a practical response. NKR vouchers are increasing the number of people willing to donate a kidney—and saving more lives.

The Big Ask, The Big Give

After a terrific workshop for kidney patients and their families and friends on Sunday, I was initially inspired and encouraged at all the valuable resources and options available for finding a donor: paired donation (aka “kidney swaps”), social media vehicles for spreading the word, financial assistance for travel and lodging, and sophisticated fundraising plans. These exciting options were unthinkable back when we learned that my son Paul’s kidneys were failing. Yes, I was ultimately able to donate to him in 2006, and so glad I did, but we had no back-up plan if I hadn’t been able to donate. I was relieved to know that someday when Paul needs another transplant, that these options now exist.

Betsy, my co-author,* and I had been invited to be on a panel to tell our story and take questions at the National Kidney Foundation’s Big Ask, Big Give program at the University of North Carolina’s Rex Hospital in Raleigh, NC. It’s understandably hard for most people to go public about such a personal need (brother, can you spare a kidney?), and it’s easier for loved ones to spread the word. The program provided useful resources and concrete advice, with step-by-step plans on telling “your story” or your loved one’s. The cautiously hopeful attendees sounded resourceful and impassioned.

But when I couldn’t fall asleep that night, something was nagging at me, and my excitement turned to righteous indignation. Damnit, people facing kidney failure and their families shouldn’t need to think about fundraising or how to word the biggest ask of their lives. They have enough things on their plate. Soon my righteous indignation turned into outright anger when I recalled at least two attendees’ mentioning that their family member on dialysis had lost their job because of needing to miss so much work. What kind of a system allows these shameful situations to happen?

My inclination was to condemn the companies that had pulled the rug out from under these vulnerable employees, but then I realized that it’s not that simple, of course. Big companies can better afford to be supportive and accommodating in the face of frequent or long absences and the need to hold a job open. What about smaller companies or mom-and-pop establishments that are themselves just getting by? That’s why it’s the system that needs fixing. Sure, not all big companies go the extra mile anyway, so absolutely, let’s give a shout-out to those that do: in my case, RTI International. I benefited from a shared-leave program through which generous, anonymous colleagues donated leave time when I’d exhausted mine.

Humane and compassionate employment support at such a time ought to be a right, not a perk.

Living donors are now protected under the Family and Medical Leave Act (FMLA), but the FMLA applies only to government employers and to private employers with at least 50 employees. (And remember, that’s unpaid leave!) Incidentally, even the Americans with Disabilities Act (ADA), which mandates reasonable accommodations for people with disabilities, applies only to companies with at least 15 employees. I’m not an economist, but it seems like a no-brainer that we need to be providing subsidies or tax breaks to enable small firms to provide paid leave and job protections for donors and recipients.

For example, if federal laws (it shouldn’t matter what state you live in) ensured that no one could lose income (much less their job) to be a living donor, more lives could be saved. Sure, money isn’t the only consideration in someone’s decision to donate, but it’s very often a deal breaker to anyone without sick leave.

The recipient’s health plan covers the donor’s medical expenses, but few insurers, like United Healthcare, include any necessary travel and lodging costs for donors who need to travel far to the recipient’s transplant center. Our tax system should allow credits, not deductions, for kidney patients’ own medical expenses and for reimbursing their donors’ nonmedical expenses.

In a recent post, I described the National Living Donor Assistance Center’s (NLDAC)’s proposal to expand its coverage to include lost wages and related childcare or eldercare expenses. NLDAC currently covers travel and lodging expenses, which is great, but lost wages and additional out-of-pocket expenses affect far more potential living donors than the need to travel. Some living donors spend thousands of dollars to offset their uncovered costs; at the same time, each one saves the healthcare system an estimated $145,000.

No one’s suggesting paying donors for parting with their kidneys–only that it shouldn’t cost anyone money to do so. Expanding donor assistance would go a long way toward making living donation financially neutral. It’s not only the cost-effective thing to do, it’s the right thing to do.

*on our book in progress: “The Greatest Gift: The Insider’s Guide to Living Kidney Donation.”