A Cautionary Tale about the Importance of Being Hydrated

After eighteen and a half years as a living kidney donor, you’d think I’d know better.

I’ve always been justifiably proud of my “numbers”: my creatinine (level of toxins in the blood) and my eGFR (estimated kidney function). Whenever I talk to legislative staffers or podcast hosts, I boast that at 76 I’m healthy and active (Zumba classes two to three times a week!) and have normal kidney function–results that would be enviable for someone with two kidneys!

Until October, that is.

That’s when I went for my annual check up and routine lab work. I was stunned at the results. For years I’ve always had normal kidney function (60 or up) and creatinine readings consistently under 1.02 (normal upper limit for women). Last year was much higher than my usual .85 but still “normal” at .94.

In October, for the first time in at least 10 years, my kidney function was a shocking 52. I conceded to my doctor that I don’t drink as much water as I should. I’m a bit embarrassed to admit I was always a little disdainful of donors who obsessively measure their fluid intake when I’d just been natural about it and always had good results. Apparently, I was getting sloppy. Last year’s .94 should have made me think twice about being so casual.

I know that creatinine readings can jump around a lot, so I was glad that my doctor suggested we retest after I came back from an upcoming trip. Let’s see if this is an anomaly, she said, adding “but be sure to be well hydrated when you test.”

We’d been back from our trip for about three weeks before I had the nerve to redo the test. I was waiting for optimal conditions. Uh-oh I wasn’t as consistent about drinking yesterday–better not test today. Uh-oh tomorrow I’m going to be out a lot and may forget to hydrate–better not test tomorrow.

I was obviously hoping for a big improvement but decided that I’d be relieved if my creatinine were down by even a little so that it would be clear the higher reading wasn’t part of an upward trend. I thought the new results could be available that evening so I watched anxiously for an email. Finally, the alert came during dinner. I raced to the computer.

Nervously, I clicked on the test results.

Drum roll please: It was .80–that’s even lower than it’s been in several years! And my eGFR? A whopping 76!

Whew. So, no, I still won’t start measuring my fluids–but will try to be mindful of always having a water bottle nearby and remembering to drink. Drink. Drink.

In addition to being reassuring, the lesson was empowering. It was a reminder that we can often still affect our health with simple daily habits. Whether you have one kidney or two (or three like my son, who has mine too), being hydrated is important for healthy kidneys.

Don’t give yourself a scare, like I did.

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

Minority Donor Awareness Month

Like most “awareness months,” this one should get more attention year ’round. Because minorities are disproportionately affected by chronic kidney disease, they are also disproportionately underrepresented when it comes to organ donation. National Minority Donor Awareness Month is a collaborative initiative of the National (Organ, Eye and Tissue Donation) Multicultural Action Group (NMAG) designed to change that.

NMAG’s objective is to bring heightened awareness to donation and transplantation in multicultural communities; the focus is on African American, Hispanic, Asian/Pacific Islander. and Native American communities.

Black or African Americans are more than 3 times as likely, and Hispanics or Latinos 1.3 times as likely, to develop kidney failure compared with white Americans, according to the National Kidney Foundation website. That’s primarily because these minorities have much higher rates of the conditions that are the major risk factors for chronic kidney disease, namely diabetes, high blood pressure, and obesity.

Earlier this year I wrote here that action finally was being taken to address critical systemic inequities in access to transplant. The formula that determines a patient’s degree of kidney function (eGFR)–and consequently their eligibility for transplant–was race based for decades until last year. The result was that fewer African Americans were deemed to be “needing” a transplant even when their creatinine (level of waste products in the blood) was the same as a white patient’s. U.S. transplant centers are now required to adjust the status of African American kidney patients who were wrongly classified based on the old formula.

That was huge news. Overall, most of the nearly 100,000 people waiting for a deceased-donor kidney in the United States wait five to ten years. Thousands die each year simply because they didn’t get one in time. Anything that unnecessarily adds to that wait is tragic.

Remember what I said in the opening about needing more minority donors? Example: In 2021 nearly 30% (28.6) of the total candidates waiting for transplants in this country were non-Hispanic blacks, but black individuals made up just 15% of organ donors in 2021.

Unfortunately, rates for living donation are even more affected. In 2021 only 18.7% of black donors were living donors versus 33.6% of white donors. Given that living donation offers shorter waits and provides better outcomes, lagging in this area further compounds the appalling disadvantages.

Taking concrete steps to reduce inequities in the system is one important way to shorten the wait for a lifesaving organ for those most in need. Raising awareness of the situation–among individuals, healthcare providers, and members of Congress (to provide increased funding for research and supports)–are others.

The NMAG collaborative has numerous print and social media messages on donation and transplantation. Spreading these messages is important this month and every month.

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

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.

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.

Wait Till You See My eGFR!

I hate to brag (no, actually, I’m proud of it!), but today I had my best creatinine and eGFR test results since I donated my kidney to my son 14 years ago. Creatinine reflects the amount of toxins in the blood (lower is obviously better), and GFR is an overall measure of kidney function (the clinical term is glomerular filtration rate). The little “e” before GFR just means estimated. The exact measure requires a 24-hour urine collection, which I vividly remember doing for my donor evaluation.

For the estimate, they use a formula based on creatinine, age, sex, and a few other factors. My creatinine is 0.75 (normal is under 1.00 for females, and mine’s been under 1.00 for about the past 5 years but never this good)! My eGFR is 80 (normal is over 60). To give you an idea, kidney failure–meaning the imminent need for dialysis or transplant–is below 15.

Given that it’s natural for kidney function to decrease as we age, at 72 years old, I would expect mine to be lower. Plus, as a living donor, there’s no cause for concern even if it’s slightly under 60 (categorized technically as “stage 3 of kidney disease”).

Those stages are based on people with two kidneys and/or patients who are continually losing kidney function. So, I wasn’t at all concerned a few years back when my eGFR was 59 but my creatinine was under 1.00.

And now 0.75! So, if you or anyone you know is worried about living donors’ losing too much kidney function, please tell them about my results. (And, no, I don’t have a water bottle attached to me all day, though I’m not knocking those who do.)

Donors, Your New-Normal Numbers Don’t = Kidney Disease!

I always tell potential kidney donors to keep an open mind but to do their homework and be as well informed about living donation as they can be. Turns out that that advice even applies years later.

Through social media donor support groups, I recently was stunned and outraged to learn that some donors have been told that they have stage 3 chronic kidney disease. One donor said she cried all night. Before you conclude that their “disease” is a result of kidney donation, I hasten to add that these were people with normal kidney function. In other words, as researchers have demonstrated, those living donors DO NOT HAVE CHRONIC KIDNEY DISEASE! Their slightly low readings are perfectly normal for them.

Apparently, their primary care providers—and, unbelievably, sometimes even nephrologists—were referring to the eGFR (estimated glomerular filtration rate) scale based on people with two kidneys and/or real kidney disease. Donors lose 25 to 35% of their pre-donation kidney function, but that’s still sufficient to lead a healthy normal life. It’s meaningless and patently wrong to look at the numbers in a vacuum and say that these people have chronic kidney disease.

As we get older, no matter how many kidneys we have, our kidney function declines. It’s especially common for people over 70, like me, to have a slightly low eGFR. At my last check-up, though, 13 years after donating my kidney to my son, my eGFR was 69 (normal is over 60).

So, if you are a kidney donor, don’t be alarmed at news of a slightly high eGFR. Ask questions (how long has it been in that range? what’s your creatinine?), and always remind your provider that you have one kidney. You may well be relieved to know that your new normal is just fine!