The National Kidney Foundation asked us advocates to make a video on Why I Advocate. Now, for me, making a video sounded pretty daunting. The message part wasn’t the problem. I wrote that fairly quickly once I decided to keep it simple. Instead of focusing on living donation, I would just talk about chronic kidney disease awareness and how I came to donate my kidney to my son.
I’ve always thought I have two valuable simple points to add to this discussion. One is that, as you may already know, I’m a wimp. I’m hardly a brave, extroverted natural risk taker. I think that can resonate with a lot of people and maybe belies some myths about living donors.
The other is about my son, who doesn’t fit the image that most people have about those who suffer from chronic kidney disease. For starters, he was young, thin, and otherwise healthy when he developed it in college. A lot of people figure that if you don’t have a family history of kidney disease (we don’t), and you’re not obese or have diabetes or high blood pressure, it’s not something you need to think about. Wrong!
Most of my kidney-related milestones mark the number of years since I donated to my son (2006), who was diagnosed with chronic kidney disease when he was in college. This month I get to celebrate a different kind of milestone: one year since I launched this website! I didn’t know what to expect when I set out to lend a helping hand to anyone who might remotely be considering being evaluated as a living donor. I wanted to offer reliable, accessible resources about donation, offering the candid perspective of someone who’d been there.
It’s been a rewarding learning process all the while, and I am fairly pleased with the results and the response. At this point numbers may not mean much, but they’re still pretty interesting. Here’s what the numbers tell us about the response (as of March 2020):
Views: nearly 5,000
Countries: 41; the vast majority of visitors are naturally from the U.S., but Canada, the U.K., India, and Australia each had more than 50.
Ranking: no. 9 of “Top 30 Kidney Donor Blogs, Websites & Influencers in 2020”
March 12 is World Kidney Day, and it seems fitting to continue our theme of women and kidneys (two of my favorite subjects). In a recent post, I pointed out that neither gets the respect and attention they/we deserve. It’s mostly because most people just don’t know a whole lot about what they do: in the case of women, we hold up half the sky, as the African proverb says. And kidneys do much the same for the body, quietly keeping it functioning as it should, balancing nutrients, eliminating dangerous toxins, regulating fluids and salt content, promoting bone health. I could go on.
Now how do I tie this back to women, you ask? Let’s consider living kidney donors. Not surprisingly, most are women. When I participated in setting the Guinness World Record for largest gathering of living donors in April 2018, it was clear that the vast majority of us donors there were women. Now, it’s tempting to say that’s all due to our natural empathy and nurturing instincts. I do believe that’s partly responsible, but I know it’s more complicated than that.
For one thing, donating a kidney, like any major surgery, usually entails taking off work for at least a couple of weeks, if you have a sedentary job as I did (editor/writer). If you’re a laborer, however, because of a restriction on lifting anything over 10 pounds for about the first 6 weeks after surgery, that obviously could mean a lot longer interruption.
Donors who are lucky enough to have sufficient paid sick leave (or any at all) don’t have to worry about lost pay. But for anyone who doesn’t, that’s a major road block to being a live donor. The reality is that, in a lot of families, it’s still harder to get by without the man’s earnings. The National Living Donor Assistance Center has been offering much-needed financial help with travel and lodging costs for some donors who need to travel to their recipient’s transplant center. It’s a wonderful program, but it hasn’t covered lost pay and other uncovered expenses. Now there’s a plan to significantly expand that assistance to cover a donor’s lost pay and major “incidental” expenses like child care and elder care. But it needs a major boost in funding from the House Appropriations Committee. Please contact your representative and tell him or her to get behind this important effort. Helping living donors helps to save lives.
Yes, March is National Kidney Month and National Women’s History Month. What do kidneys and women have in common, you ask? For starters, both 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 clearly do need these reminders. Certainly the recent death of the brilliant NASA mathematician Katherine Johnson(remember “Hidden Figures”?) highlighted the ongoing need for both black and women’s history month.
Similarly, this month we highlight the critically important role that kidneys play in our bodies. 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? It would be crucial enough if they just removed dangerous toxins from the blood, but they also 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 can achieve 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. More than 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 infectionwhen 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 just 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!)
Ayres received a kidney from his mother (like my son did!) 15 years ago. Since then the 42-year-old kidney transplant recipient has been happy to be a practice goalie, Toronto arena operations manager, and sometime-Zamboni driver. He never dreamed he’d get his turn in an NHL game, an always-physical and sometimes brutal sport. But on February 22, when a string of injuries left the Canes without a goalie, he was called to the ice with 28:41 to go in the game. He stopped eight shots and helped earn the team a dramatic 6-3 victory in his NHL debut.
The Canes are selling No. 90 Ayres tee shirts, for which he will receive royalties. A portion of the proceeds will go to a kidney foundation in his honor. The Canes are working with him to determine which foundation. There were a lot of winners that night in Toronto. The donation and the increased awareness of kidney transplants means that there will be even more.
What do the celebrities listed below—among them, athletes, actors, musicians, of different ages, races, and ethnicities—have in common? They’re all healthier, and very likely happier, because a living kidney donor gave them a shot at a better quality of life. The best way to shorten someone’s wait for an organ–rich or poor, famous or not–is to find a living donor.
Some of these live-kidney transplant recipients have been spokespersons for National Kidney Foundation campaigns, and some, like former NBA star Alonzo Mourning, comic George Lopez, and former NFL star John Brockington have even launched their own kidney disease awareness foundations. (Did you know that my dear WELD [Women Encouraging Living Donation] started as an offshoot of the John Brockington Foundation?) Other celebrities have turned to the media to share their transplant experiences. Selena Gomez and her donor, Francia Raisa, gave several major interviews in 2019 on Gomez’s transplant.
Chronic kidney disease is even more common than breast cancer or prostate cancer–yet the general public knows very little about it. If more celebrities who’ve been touched by kidney disease and transplant would tell their life-changing stories, it could encourage more people to have their kidneys checked, register as organ donors, and even consider being living donors. All those actions would go a long way toward reducing the years-long wait for a kidney and ultimately saving more lives. By the way, celebrity status and money offer no privileges on the national waiting lists for a deceased donor.
How many of these celebrities did you know had had successful kidney transplants (the year of their transplant is next to each name)?
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!