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.

Betsy’s Need for a Donor Makes Local TV News

So glad that ABC News (WTVD) did a piece on Betsy Crais’s need for a second transplant (see the video), as I described in a post about my book’s co-author last month.

Betsy initially thought she had four possible kidney donors in her immediate family. A few weeks ago she received a call from the transplant center saying that one by one, all of them had been eliminated. Potential donors have to be in excellent health and can be disqualified not only if they have a condition that could potentially harm the recipient–but also if donating might jeopardize their own health.

Fortunately, Betsy has never been one to be discouraged for long. She took a deep breath and sat down to send off an email to friends, family, and colleagues, letting them know about her kidney failure after 15 years of a successful transplant. Within minutes of hitting SEND, Betsy was heartened to receive not only messages of concern and support but even several inquiries about how to be tested to be a donor.

Because the transplant center will consider and test only one candidate at a time, Betsy and her family now have to wait impatiently for word from the transplant coordinators. Although Betsy is on the waiting list for a deceased donor, that wait is often several years long. A transplant from a live donor might be just months away, typically has a better chance of success, and can last up to twice as long. Naturally, Betsy is fervently hoping for a live donor.

In the meantime, she had an access port surgically created in her arm in readiness for dialysis. Betsy’s condition is stable, so there’s a chance she may never need it–if a donor is approved in time, she could have a preemptive kidney transplant (that is, before she needs dialysis).

Transplant Anniversary: Notes from My Son (My Recipient)

Thirteen years ago this week, my son and I went into UNC transplant center with four kidneys between us. When we left a few days later, we still had four, but he had most of them. He still does. I’ve written here and elsewhere about “our” story, so this is his chance to share his perspective on this momentous experience, which had begun 2 years earlier.

Thirteen years ago I received a kidney transplant from my mother. I appreciate this kind act, but knew she would not disappoint. I also am glad to know that she has benefited from this act, and has become an activist for living kidney donation.

Here’s some background: when I was in college, I was diagnosed with IgA nephropathy. It was discovered in lab work after I had gotten sick with strep. Years later I learned that that was often a trigger for my type of kidney condition. I had no symptoms, though, and was otherwise healthy—I didn’t have diabetes or high blood pressure, which are common causes of kidney failure—and I was thin, with no family history, so the nephrologist said it was something to monitor and take seriously, but wasn’t expected to get much worse, at least not in the foreseeable future. I had regular lab work throughout college.

At my first post-college appointment, the blood test results showed that my kidneys were failing; I learned I would soon need dialysis and then would have to be on it until I could receive a kidney transplant. The doctor first told me I might have to start dialysis in a year, but it ended up being only 3 months. I had just graduated college, and I was nervous but hopeful about the future. Before that appointment I had no idea I had kidney failure, let alone that I’d be on dialysis in 3 months.

Dialysis was the worst experience of my life. It began with two painful insertions of needles into my arm, followed by being connected to a dialysis machine 3 hours at a time 3 days a week. With prep time and post-time, plus another hour for transportation, it was more than half a day. When I got home I just didn’t feel like doing much of anything. I didn’t feel like myself and couldn’t relax. I had time for little else. I felt like my life was under a microscope.

My parents began the process of applying to be donors. My dad was eliminated for having had a kidney stone and my sister was too young at the time. My mom made it through the first round, but the hospital wouldn’t allow her to begin the actual testing because I did not have health insurance that would cover the donor, which is usually part of the recipient’s insurance. Because I was no longer a full-time student, I wasn’t covered by my parents’ health insurance. Had the Affordable Care Act been in effect then, since I was under 26 I could have remained on my parents’ plan. Medicare has an ESRD category for kidney failure patients, but it required a certain amount of “work quarters” to qualify. This was particularly upsetting because having just been in college and now with my health suddenly failing, I didn’t yet qualify. I then had to earn work quarters while on dialysis, which limited how much I could work.

I felt horrible about the awful luck that put me in this situation. I was angry at a health care system that puts such policies in place. I believe I have a right to health care. Had insurance not been an issue, I could have spent 1 year less on dialysis and gotten my transplant a year earlier. And if, instead, my kidneys had failed a year later, this policy might have been moot because I probably would have earned enough work quarters by then.

Meanwhile, for more than a year my family made countless phone calls and wrote pleading letters to the hospital and anywhere we could, hoping I could somehow get a transplant soon. After a lot of advocacy, the hospital finally agreed to take on the costs and allowed my mom to begin the testing. It even agreed to pay for the donation surgery itself if Medicare did not come through, but I accumulated enough work quarters by then.

Paul and my husband, Neil, with me at the 2016 Triangle Kidney Walk in Durham, NC.

I knew that if my mom couldn’t donate to me, there were no other potential donors at the time. So I was really crossing my fingers after each of her tests, knowing that she could be disqualified at any point.

I checked into the hospital the day before the transplant and had dialysis there. When I prepped that night I was mistakenly told I could use the special soap for my hair, and it got in my eyes. They were still stinging the next morning, which naturally increased my nervousness about the transplant.

Transplant day finally came after 1 year and 8 months of dialysis. I vaguely remember being wheeled into intensive care after the surgery. From what I could tell, the doctors thought it had gone successfully. When my dad and sister came in to see me and asked me how I was, my response was “could be worse.”

I recovered at my parents’ house for more than a month. I still had several things attached to my body. I had frequent doctor’s appointments and usually would have something removed/disconnected each time: a stent one day, a catheter another. Slowly, I began to regain my life and at a point feel like I did before the transplant and then, eventually, feel better than I had on dialysis.

By no means is being a transplant recipient easy—there are a lot of things to keep track of, like medicines, appointments, protection from getting sick. There will always be potential hazards, and I’ll always need to take extra precautions. I check expiration dates a lot more closely than before and cancel get-togethers with family and friends if one of them is sick even with a cold. My immune system will always be suppressed to keep it from rejecting my mom’s kidney.

But life as a transplant patient is so much better than the traumatic experience I went through as a dialysis patient. –Paul Offen, Chapel Hill, NC

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.

Donate Life Month Quiz: 5 True or False about Dialysis

True or false?

1-People with kidney failure have dialysis every few weeks.

False—For hemodialysis at a dialysis center, the standard is 3 times a week; patients who have some form of dialysis at home may do it 4 to 7 times a week.

2-Dialysis sessions usually last 3 to 4 hours at a time.

True—The average session at a dialysis center is 4 hours on the machine. (That’s not counting the weigh-ins and pre- and post-blood pressure readings. ) Again, people who do it at home may vary the amount of time, including an option of doing it overnight while they sleep.

3-Dialysis can approximate about half of kidney function.

False—As advanced as it is, dialysis accomplishes only about 20% of normal kidney function.

4-People on dialysis can skip a few sessions if they’re busy or go on vacation.

False—Skipping a session very occasionally is not usually a problem, but skipping several sessions is extremely dangerous and can be fatal as toxins build up in the blood. Patients who go out of town can try to arrange in advance to have sessions at a dialysis center at their destination.

5-Dialysis is an equally effective alternative to transplant for someone with kidney failure.

False—When possible, a kidney transplant is by far the better option. After one year of treatment, patients on dialysis have a 20-25% mortality rate, with a 5-year survival rate of 35%. People who receive transplants have a 3% mortality rate after 5 years.*

*University of California at San Francisco. The Kidney Project, https://pharm.ucsf.edu/kidney/need/statistics

The Greatest Gift

Carol Offen

Between us, my son and I have four kidneys—not very remarkable, except that he has three of them. I gave him one of mine about twelve years ago. The reason was simple: after spending nearly two years on dialysis, he clearly needed the kidney and I didn’t. I still had another that worked just fine so it was a perfect opportunity to share resources within the family. Today even unrelated people in different parts of the country can do the same, thanks to sophisticated computer algorithms. But this was more than twelve years ago.

My son, Paul, had the extraordinarily bad luck to develop chronic kidney disease—which can gradually lead to kidney failure—when he was in college. He was otherwise healthy, we had no family history of it, and he didn’t have diabetes or hypertension. Plus he was skinny.

What he had was a lingering strep infection.

Keep reading!

This post is excerpted from an article I wrote for the Fall 2018 issue of South Writ Large, a quarterly online magazine published since 2007. The theme of the issue was sharing resources, so living kidney donation was a natural fit.