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.

World Kidney Day Should Last All Year

Like so many things that receive a designated day or a month of honor, kidneys deserve our attention every day. I’ve had a healthy respect for them ever since my son’s kidneys began to fail soon after he graduated from college and he had to start dialysis. Dialysis is a remarkable process, removing the toxins from the blood, managing a delicate balance of fluids and nutrients, keeping blood pressure in check, and so much more.

Dialysis can be a life saver, and I certainly wish there were an equivalent for people whose liver is failing. But even with all the bells ‘n’ whistles (bells really do go off in a dialysis clinic when something goes wrong), dialysis can achieve only about 20% of kidney function. Meaning, not only is it not a cure for chronic kidney disease, it’s not even a great long-term treatment for most patients. It simply buys time until a new kidney—whether from a deceased donor or, if you’re fortunate, a living one—is available. (For people who have other serious health conditions, a transplant may not be possible.)

Although plenty of people fortunately do well on dialysis for many years, the average outcomes with a transplant are far better. The 5-year survival rate for someone undergoing dialysis is about 35% versus well over 90% for a kidney transplant.

On this World Kidney Day (March 11), remember that kidneys are pretty special (even if, admittedly, they’re not as cute as the little purple guy with me in the photo) and shouldn’t be taken for granted. If you don’t know your kidney function, ask your healthcare provider. If you haven’t had the lab work lately, make an appointment for a check-up. The adage about an ounce of prevention being worth a pound of cure couldn’t be more apt when talking about kidney disease.

Getting Closer to Extending Drug Coverage for Transplant Patients

A while back I wrote here about the insanity of cutting off lifesaving drug reimbursement for kidney patients. I’m happy to report some real progress on that front. At long last, a bill to extend Medicare coverage for kidney transplant patients–and Honor the Gift of life–is ready for a committee hearing this week! HR5534 is scheduled for a hearing in the House Subcommittee on Health. Please contact your members of Congress and urge them to support this crucial and common-sense bill. And sign the pledge to spread the word: https://honorthegift.org/act/

It’s got a long multi-syllabic name–Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act–but it’s really pretty simple. It safeguards patients’ access to critical lifelong medications–that is, long after the 36 months currently allowed for patients who don’t otherwise qualify for Medicare. Oh, and this is hardly a measure that will break the bank. On the contrary, it will save Medicare an estimated $70 million over 10 years [per a later report from the Congressional Budget Office]!

How? Because antirejection meds for transplant patients keep people healthy and productive. Patients who don’t have other drug coverage and can’t afford their expensive medications (full cost is roughly $3,000 per month) often try to do without or cut back. The tragic result is death or the need for dialysis, which costs the government about $90,000 per year. Not only is dialysis far more expensive than drug reimbursement, it comes with a much worse prognosis. People on dialysis have a 5-year survival rate of 35% (contrast that with a transplant patient’s 97% survival rate 5 years out). Those lucky enough to get off dialysis and have a transplant [see my son’s candid story about life with a transplant vs. being on dialysis] naturally desperately try to protect that gift.

About 113,000 people in this country are on waiting lists for a lifesaving organ–nearly 100,000 of them are waiting for a kidney. As a society, we too need to do all we can to protect that precious gift.

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.

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

15 Years Is Not Long Enough!

I really hoped I would never need to write this post.

If you’ve checked out my story or many of my blog posts, you know that Betsy Crais, the co-author of my book in progress* and a dear friend, is a kidney recipient from a live donor. Betsy had her transplant 15 years ago and had been doing really well until the last several months.

I am so sad to say that Betsy’s kidney function has declined to the point that she now needs another transplant. I’ve always said that Betsy was the poster child for living a full and productive life with a kidney transplant: not only does she work full time as a university professor and researcher, shunning retirement, but she’s active on grant review panels, committees, and national organizations–on top of being a devoted wife and mother and a lovely person (not to mention a co-author and a donation advocate, of course).

Because Betsy, like her mother and two of her sisters, has polycystic kidney disease (PKD), her two adult children are at risk of developing it themselves. They can’t be considered as donors until they’re well into their thirties, when the disease typically manifests itself. Betsy had fervently hoped to avoid dialysis, but in the absence of a living donor for now, she is having an access port put in soon and expects to start dialysis this summer.

If you know anyone who has ever remotely considered donating their kidney (or maybe the idea of doing it yourself is what brought you to this site), please contact me (carol.kidneydonorhelp@gmail.com). I’ll provide the contact info for the donor nurse coordinator at UNC Hospitals. Betsy is blood type A, but as you may already know, these days it’s not essential to have a matching blood type (see the FAQs). There are lots of options now.

Thanks for anything you can do to help spread the word!

*The Greatest Gift: The Insider’s Guide to Living Kidney Donation.

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

5 (Big) Benefits of Live Donation–for the Donor

In my post last week, I explained some of the enormous benefits of a live vs. deceased-donor kidney for the recipient, but did you know that there are real benefits to the donor, too?

For family members or couples, they are nothing short of dramatic:

1-To see a loved one who’s been pale, weak, and often listless for many months or years gradually become their old self again is pretty powerful. And a partner who wasn’t interested in intimacy during the period when he or she was on dialysis may now discover a new bond.

2- A spouse or parent whose ability to work was limited for a long period may soon resume a full-time schedule–or even launch a new career–to substantially improve the family’s finances.

3-Couples that have been uncomfortable for a long time about socializing—whether because of specific obstacles or simply due to the patient’s lack of energy or interest—will soon be able to enjoy evenings out with friends or family.

4- If the donor has been the caregiver, the reduced stress and no doubt improved sleep can have considerable benefits in mood, overall outlook, and even job satisfaction.

For family members or anyone who donates a kidney—even to a stranger–the benefits are universal:

5- The feeling of personal gratification is indescribable. Knowing that you’ve helped give someone—anyone—a chance at a healthy, productive life—is an extraordinary feeling. 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 nearly all 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 risk might do well to acknowledge the undeniable benefits for certain donors as well.

“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.

National Kidney Month and National Women’s Month

Yes, March is National Kidney Month and National Women’s Month. What do kidneys and women have in common, you ask? Both groups are underappreciated! We can hope that someday we will get to a point where we don’t need to introduce people to integral aspects of our culture and our history (like Black History Month). For now, though, we obviously do. And this month we highlight the critically important role women play in our society. Similarly, we highlight the critically important role the kidneys play in our body.

Do you know what your kidney function is? You may think you know what women contribute to daily life, but do you know what kidneys do? For starters, they remove dangerous toxins from the blood, regulate the amount of fluids in our body, maintain the salt content of those fluids, balance minerals, produce urine, promote bone health, and so much more.

I’ve had a healthy respect for kidneys ever since my son was in dialysis. For nearly 2 years, dialysis machines, doctors, nurses, and technicians did a masterful job of trying to approximate what healthy kidneys manage to do every day.

Yet even with doing their damndest to get this juggling act all right, dialysis could produce only about 20% of normal kidney function. One-fifth.

Like women, kidneys pull off much of their heroic daily work quietly, often without calling attention to themselves. That’s why when kidneys are starting to fail, we usually don’t notice. About 30 million Americans have chronic kidney disease—meaning they’re gradually losing kidney function—and most of them don’t know it. It’s called “the silent killer” because people usually don’t feel sick (and often look fine) until it’s dangerously far along. I know of people who just had a routine screening at a health fair, or went to the ER for a broken arm, or just didn’t feel right—only to learn, to their shock, that their kidneys were failing significantly and they needed to start dialysis ASAP.

My son knew he had kidney disease ever since it was diagnosed following a strep infection when he was in college. He was otherwise healthy and was told to monitor the condition with routine blood tests, which he did, never showing or feeling any symptoms. It was only at a routine checkup soon after his college graduation that the tests showed a precipitous decline in his kidney function. Within a month he was having surgery to put in an access point for dialysis, in 3 months he was undergoing dialysis 3 days a week, and close to 2 years later, he was welcoming my left kidney into its new home. It’s lived there happily since 2006, by the way. (My right kidney is managing fine without it.)

So, this month, please make an appointment to have your kidney function checked with a simple blood test. (And be sure to thank a woman every day!)