Ode to My (Remaining) Kidney

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, as National Kidney Month draws to a close, 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 .75, enviable at any age. Even my GFR, a formula that uses creatinine plus age, sex, race, and weight to estimate overall kidney function, is an impressive 80 (anything over 60 is normal). It’s common for anyone’s kidney function to decline with age, so at 72, 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.

My Do’s and Don’ts for Advocacy

Had a very full–and rewarding–day of meetings with congressional staffers and fellow National Kidney Foundation advocates last week as part of NKF’s Virtual Kidney Patient Summit, which drew nearly 250 advocates. We shared our personal connections to kidney disease and briefly outlined kidney-related legislative priorities. My group’s first meeting of the day was with Nora Blalock, legislative director to my Congressman, Rep. David Price: a long-time supporter of the kidney community. He’s going to cosponsor the Living Donor Protection Act once again!

Make a Connection

Nora, whom I’d met when I was part of another group at the first Summit in September, recalled my sharing my story of donating to my son in 2006. She was kind, engaged, and knowledgeable. Rep. Price had joined our Zoom that day in September and was very supportive of the kidney-related legislation we discussed. So, going into this meeting, I already knew that his legislative director would be receptive to our cause and I was more at ease.

Speak from the Heart

I knew that our other meetings might not be quite as easy, but I was hopeful. I guess I was more at ease participating in this Summit than I was in September. Example: In another meeting for this Summit, I found myself saying that supporting the Living Donor Protection Act was “really a no-brainer.” Probably not the most diplomatic approach, but the staffer got my point. I’d abandoned my script of talking points and just started speaking from the heart. We’re trying so hard to encourage people to consider being living donors, I said, shouldn’t we start by not discouraging them by throwing obstacles in their way? For one thing, we need to make sure that insurers can’t turn down or overcharge donors just for having one kidney. And we need to write into the law that donors may use Family and Medical Leave time for donation (commonly done in practice, fortunately). Note that that’s unpaid leave. Isn’t that the very least we can do–simply protect the donor’s job–while they’re out saving someone’s life?

Try to Give Examples

I pointed out that at 72 and healthy (with kidney function that would be enviable for someone with two kidneys), I could be turned down for life insurance tomorrow. Besides the Living Donor Protection Act, we were also there to generate support for expanding access to home dialysis. More than half a million people in the United States receive dialysis, and the majority of them go to a center for it, usually three times a week. For many, if not most, that’s their clear preference. However, thousands of those kidney patients live far from the nearest dialysis center and have to drive hours round trip for each session. Many such patients and their families might well want to consider doing dialysis at home. The brand-new legislation in question, not yet introduced, is called the CARE (Covering All Reasonable Expenses) for Home Dialysis Act. It would provide both financial and logistical support to make home dialysis more feasible for more people.

Use Simple Logic

Finally, fewer people would need home dialysis–or dialysis at all–if kidney failure were prevented more often rather than treated. Increased public awareness, more medical research, early detection, and early treatment are the obvious answers, and you can probably guess the key to all of them: increased funding. Chronic kidney disease research is vastly underfunded, particularly when you consider that the disease affects about 10% of the population–way more than, say, breast cancer or prostate cancer, both of which receive more in research funding.

We were asking for the lawmakers’ support for increased funds because prevention and early treatment not only save lives–they save money for Medicare. In honor of National Kidney Month (March), please contact your representatives and senators and ask them to support these important initiatives.

Hey, What about the Don’ts?

Don’t be rude. Don’t be nervous. Don’t try to be polished–just be yourself.

And maybe try not to use terms like “no-brainer.” Between now and my next time out, I’ll be looking for a synonym that’s a bit more diplomatic but just as clear. (If I don’t find one, I may just stick with no-brainer.)

Helping Donors and Would-Be Donors, 1 Visitor at a Time

Well, this is exciting: I just hit the 5,000-visitors mark–and more than 7,000 views! I launched this site officially last year with a blog post, fittingly, on National Kidney Month and National Women’s Month–and what these amazing specimens have in common.

As a living kidney donor myself (I donated to my son in 2006), my goals for the site were simple:

Photo by Pixabay on Pexels.com

“… to help kidney donors and would-be donors by sharing my experience here along with candid, accurate information; by debunking myths; and providing resources.”

I’m still doing that and hoping to assist–and perhaps inspire–one would-be donor at a time, if need be. I love getting questions and direct emails from visitors to the site. The Greatest Gift: The Insider’s Guide to Living Kidney Donation–the book I’m writing with Betsy Crais, a living-donor kidney recipient–is getting closer to publication. More on that in coming months!

I’ve always welcomed feedback. If you have any suggestions for the site, I’d love to hear from you: carol.kidneydonorhelp@gmail.com

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!)