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Coronavirus, Kidney Patients, and Everyone Else

If you’re reading this, chances are you’re considering donating a kidney or have already done so–but you also very likely know and care very much about someone who has chronic kidney disease (in my case my son, Paul, and my friend/co-author, Betsy, for starters). Or maybe you have it yourself.

With kidney patients at a high risk of contracting COVID-19–whether they are transplant recipients, are undergoing dialysis, or contemplating treatment–this is a particularly important issue for all of us and others in the kidney community. I hope that you will share the resources below with your friends and family so that they can remain safe and healthy. These materials are provided by the National Kidney Foundation (NKF) and offer advice on keeping healthy during this horrific pandemic. These links will be updated as needed.

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The latest information and best practices to be prepared for COVID-19: https://www.kidney.org/…/be-prepared-kidney-patient-prep-co…
Information to help kidney patients and their families respond to emergency situations: https://www.kidney.org/help

And a blog post from NKF’s CEO Kevin Longino on Covid-19 and the kidney community: https://nkfadvocacy.blog/…/supporting-you-during-the-coron…/

Whatever your own health status, and wherever you live, please stay safe and closely follow recommendations and requirements in your area. Also, here’s clear, valuable information on the virus from someone who knows more than anyone on the subject, Dr. Anthony Fauci, interviewed by Trevor Noah. https://youtu.be/8A3jiM2FNR8

Celebrating Milestones

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):

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Visitors: 3,000+

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”

Top Posts:

Just How Unlikely Is It for a Donor to Need a Transplant?

            Wondering Who Gave a Kidney to Stevie Wonder?

            Kidney Swaps and Vouchers and Chains, Oh My!

            What Do These Celebrities Have in Common?

            5 (Big) Benefits of Live Donation—For the Donor

Here are a few posts that I wish had gotten more attention:

            Howl the Owl and Brenda Cortez Help Kids Grasp Organ Donation

            Kidney Vouchers Are Even Cooler Than You Thought

            Health Materials in Plain English

            Health Information Is Power!

Thanks so much for reading my posts and following me. Please let me know what topics or features you’d like to see on this site.

Happy World Kidney Day–with a shout-out to women!

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.

Kidney Recipient/Goalie Goes for the Green

Just read another wonderful piece about the kidney recipient/hockey goalie, David Ayres, who helped win the game for the Carolina Hurricanes last month. The fascinating stories have brought much-needed attention to kidney disease and transplant. In his honor, the Hurricanes sold No. 90 shirts, and part of the proceeds is going to the National Kidney Foundation in North Carolina.

Now Ayres is using his newfound fame to promote organ donation generally, with a different kind of shirt: a month-long campaign to support “Green Shirt Day” in Canada. The campaign honors the memory of Logan Boulet, a young Humboldt Broncos ice hockey player killed in a team bus crash in 2018. His organ donation prompted thousands of Canadians to register as organ donors. They call it the “Logan Boulet Effect.”

Happy National Kidney Month and National Women’s Month!

NASA

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 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 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!)

Goalie who scored a kidney helps win NHL game!

In my last post I wrote about celebrities who’ve been given a shot at a fuller, healthier life because of a living kidney donor. If you thought they mostly led quiet restricted lives, along comes David Ayres, the emergency goalie who won the game for the Carolina Hurricanes hockey team against the Toronto Maple Leafs!

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 These Celebrities Have in Common?

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)?

Stevie Wonder 2019

Ed Kranepool 2019

Selena Gomez  2017

Tina Turner 2017

Aron Eisenberg 2015

Sarah Hyland 2012

Tracy Morgan 2010

George Lopez 2005

Alonzo Mourning 2003

John Brockington 2002

Sean Elliott 1999

 I wish them all continued good health with their “new” kidney. My son has had more than 13 years with his (that is, mine).