Here’s to You, Living Donors!

During Donate Life Month, the focus is typically on urging people to register to be donors after their death to try to meet the critical organ shortage. More than 100,000 people in the United States are currently waiting for an organ, most of them for a kidney. The reality is that, even though registering to donate is extremely important, unfortunately, it’s not sufficient to meet the need. That’s why I’m an advocate and the reason I created this website: to encourage and support people to consider living donation.

This year for the first time, Donate Life Month includes a special day to salute living donors: April 7 is Donate Life Living Donor Day! The large photo below–the same one that graces the front page of this website–was taken almost exactly three years ago at the Bean in Chicago. We were quite a mixed bunch, mostly kidney donors but a few liver donors as well–such as the woman from India who donated to her husband (they were there with their two beautiful children, in fact). That weekend I met donors of all ages and regions. Some had given to family members, to friends, to someone they barely knew, and several even gave to someone they’d never met and still hadn’t years later. It was an inspiring, emotional, and extremely fun weekend.

Living Donors Rally, April 21, 2018, in Chicago–we set a Guinness World Record for largest gathering of living donors! Do you see me?

In addition to adding to the number of available organs, living donation has several bonuses. Having a living donor typically produces a better outcome for the patient. It’s usually a better match, the surgery can be scheduled under optimal conditions, and, most important of all, it lasts longer. For a kidney recipient, that can be double the lifespan they might have after a transplant from a deceased donor. And even though living kidney donation is definitely major surgery, virtually all donor surgeries are done with minimally invasive laparoscopic surgery, which makes a big difference in both pain and time to bounce back. It was much easier than this self-described wimp had ever expected.

Another bonus: every time someone who’s on the national waiting lists for a deceased donor finds a living donor and is removed from the list, that obviously shortens the list accordingly. So, in addition to helping the recipient, donors are indirectly helping countless others as well.

So here’s to you/us living donors! Please think about learning more on the subject, ask questions, think some more, and consider joining our ranks. Studies find that the vast majority of living donors have no regrets. I know it was the proudest day of my life.

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.

No, No, Living Donors–Don’t Think You Have Kidney Disease!

Every few months, I hear about living kidney donors who are worried about their recent diagnosis of “stage 3 kidney disease.” Sounds scary. The first time I heard that, several years ago, I was upset at the news, which seemed to be very common. Until I read further and learned that these donors were apparently healthy and, most important, their creatinine level (a fairly reliable indicator of kidney function) was just fine. In other words, they absolutely did not have kidney disease.

That’s when I learned about the misleading logic of this “diagnosis.” Their providers were basing their diagnosis solely on an indicator (GFR) conceived for people with two kidneys. When you have only one kidney, it’s expected that your creatinine (a measure of toxins in the blood) may be higher for awhile, maybe even permanently, but usually settles back down to a respectable level. (Wait till you hear about mine!)

What if it stays at a higher than “normal” level? If it’s stable and there are no other signs of kidney disease, that’s just their new normal. Not to worry. Please don’t take my word for it–I have no medical credentials–but I trust what I read on the topic in respected medical publications.

As a healthy, proud living donor–and a donation advocate–it really bothers me that living donors are being needlessly frightened by their well-meaning but uninformed physicians–even some nephrologists. At a time when we still need more living donors and want to encourage people to consider donation, it just adds to the misinformation about living donation.

So I raise the subject here periodically and in online support groups. But that’s when I wish that my little bully pulpit were a lot bigger. I keep thinking–if only someone like Nicholas Kristof (the award-winning journalist is one of my long-time heroes), would take it on as a campaign to educate not only the public but the medical community. Wouldn’t that be a great way to honor National Kidney Month?

Advocacy Ripples in the Medical Community

I became a living kidney donor simply out of necessity, because my son needed a kidney. I became an informal donation advocate basically because the experience was so much easier than I feared, and so gratifying that it had an extraordinary impact on me, so I wanted others to know about it. At first I advocated by writing op-eds and online articles… then through my book with Betsy Crais, The Insider’s Guide to Living Kidney Donation, which is now in production.

While our book was in the works, next came this website and blog, and I started to see the ripples spread out. Then I became a National Kidney Foundation kidney advocate and started meeting with lawmakers. I was excited to see that impact widen as I lobbied for legislation to protect and support living donors and to help people like my son and Betsy, with chronic kidney disease.

Now I’m thrilled to report that with the recent publication of a widely heralded textbook for transplant professionals, Living Kidney Donation, those ripples are spilling into the medical community. As lead author of a Patients’ Foreword, I was honored to help craft a message to those professionals who work with kidney patients, donors, and their families every day.

A “Patients’ Foreword” for a medical textbook is certainly a novel idea, and it’s totally consistent with co-editor Krista Lentine’s advocacy for kidney transplant patients and living donors. Dr. Lentine was recently honored with a major award from NKF, the 2021 Excellence in Kidney Transplantation Award.

I’m humbled to share a citation with her and grateful to know that the patient’s perspective will have a wider, meaningful voice in the medical community.

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.

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.)

Stevie Wonder: Are You Vaccinated?

I’m asking not just as a concerned long-time fan but mostly because he’s in the over-65 age group and, even more important, a kidney transplant recipient. The latter is a particularly vulnerable group because of having a tamped-down immune system designed to avoid attacking his transplanted kidney. If a kidney recipient like Stevie Wonder, or my son (to whom I donated 14 years ago), contracts the coronavirus, he is at far greater risk of having a severe case.

There are still some skeptics out there who fear taking the vaccine because kidney recipients—immuno-suppressed individuals in general—were not included in the vaccine clinical trials. I’ll admit I was a bit wary in the very beginning, too. But this is not a live vaccine, it’s safe, and it’s similar to earlier groups of vaccines about which scientists have a lot of experience. Also, and frankly, this is the bottom line: we do know about the risks of COVID and they’re very real. It’s no contest. Health authorities recommend that transplant recipients be vaccinated.

Alas, like everything else about this pandemic, access to the vaccines is not uniform. It varies by state, by demographic groups, and by circumstances. Millions of vulnerable people have not yet received theirs. In my state, North Carolina, healthcare providers of people with kidney failure and advocates have urged the governor to move up this group in the priority order. As people in the currently eligible population still struggle to snare an appointment for theirs, it hasn’t happened yet.

Being in that eligible population, I feel very fortunate to be fully vaccinated—and now fully protected. Why am I still wearing a mask in the photo then? For the same reason I’ve been doing it since last spring: because we don’t know yet if vaccinated people can infect others–and I care about the people around me.

According to the Washington Post, “An estimated 81 million adults have conditions that the Centers for Disease Control and Prevention identifies as posing an increased risk for severe covid-19, the illness caused by the coronavirus.”

 So, sure, it’s extremely comforting to know that I’m fully protected, but that’s not true for my immuno-suppressed son, my immuno-suppressed friends, my friends with health conditions in other states, my younger daughter, my neighbors—in fact, most of my community—so you bet I still wear a mask and keep my distance. It’s worth it.

(Stevie: If you have had the COVID shots, please show your card, too, and continue to tell your story. Let other transplant recipients and any skeptics know!)

A Perfect Podcast to Honor National Donors Day

It’s been a busy couple of weeks since I last wrote about recording a guest spot on “This Podcast Will Kill You.” The episode on organ transplants aired this week and is available now. It fittingly arrived just in time for National Donors Day, which falls on Valentine’s Day. Learning about the fascinating biology and history–and critical need for–organ transplantation should spur more people to decide to register as organ donors.

Photo by Pixabay on Pexels.com

About 110,000 people in the United States are waiting for a lifesaving organ (most of them for a kidney). Only about 3 in 1,000 people die in such a way that organ donation is possible–for example, in a hospital following a car accident–so the pool is very small. That’s why it’s critical that everyone register. And those who can be organ donors can donate up to eight organs: two kidneys, two lungs, a pancreas, a liver, a heart, and intestines. Plus eyes and tissue–even hands and face.

The TPWKY podcast episode (no. 66, by the way, entitled “The Outs and Ins of Organ Transplants”) opens with my telling my story of donating to my son. Then Betsy Crais tells her story of receiving a kidney. Of course, we talk about our upcoming book, The Insider’s Guide to Living Kidney Donation. We were thrilled to learn that Erin Welsh, the co-host who interviewed us, had already read the complete manuscript and loved it. She urged listeners to watch for the book and even wrote a blurb for the book cover!

Please go to organdonor.gov or any of several sites and register now. It will take just a minute. And be sure to tell your family of your wishes to be an organ donor. As much as I want to encourage living donation, on the opening page of this website, I recognize that “being a living donor isn’t for everyone. It’s a big decision.” Registering to be a donor after your death, on the other hand–when you don’t need those precious organs anymore–just seems like a no-brainer.

Talking about Books

I have so much to report this week as our book The Insider’s Guide to Living Kidney Donation makes its way to publication. Our copy editor is finishing up the detail work, and several people we admire in the donation and kidney community are reading the manuscript in preparation for writing back-cover blurbs! I’ll keep you posted on its progress as it goes into production in the coming weeks (we’re aiming for a spring publication).

Photo by Stas Knop on Pexels.com

And this week my co-author, Betsy, and I recorded an interview for “This Podcast Will Kill You,” a very popular and creative science podcast. The engaging young scientists who are the hosts (both named Erin, by the way), know how to translate fascinating, but complex, information on diseases into accessible material for a wide audience. Their enthusiasm is infectious, too.

For an episode on organ transplantation, which will air February 9, Betsy and I described our experiences as a living donor and a kidney recipient. In the process, we hoped to shatter some myths about this similarly fascinating but complex subject. Naturally, we were also happy to talk about our upcoming book. Chatting comfortably with Erin Welsh was great fun.

Meanwhile, on other book fronts, I’m involved in a textbook for medical professionals, Living Kidney Donation: Best Practices in Evaluation, Care and Follow-up. Yes, you read that right: a medical textbook. No, I’m obviously not a medical professional, but the lead author, Krista Lentine, asked me to collaborate on a Patients’ Foreword for it (I’m proud to be its lead author). In the foreword we share the often overlooked perspectives of donors, recipients, and their families on events that of course affect the entire family. The textbook will be out in March.

Stay tuned for updates as each “event” goes live.

Living Donors: What Do You Think About COVID Vaccines?

Last week I wrote about issues surrounding kidney recipients’ getting a COVID-19 vaccine. In it I offhandedly mentioned that risks and priority currently aren’t considered particular issues for living donors. So I’ve been trying to get an appointment for a COVID vaccination ever since the eligibility in my state opened up to include people over 65. Putting aside the frustration of not enough vaccines, limited appointment times, the disorganization, and so on, personally, I’m all for it.

Photo by Alena Shekhovtcova on Pexels.com

But I know that some people aren’t so sure.

I was glad to learn that studies of living donors’ attitudes have already started. Drexel University College of Medicine, for one, wants to know what we think–and what that’s based on–about donors and recipients getting the vaccine. Whether you’ve already donated or you’re still in the evaluation process, please take this anonymous survey on living donors’ and potential donors’ multifaceted perspectives.