Thanksgiving Dinners and Donors

Every Thanksgiving at my house, we go around the table after dinner and talk about what we’re each thankful for–a fairly typical American tradition that for us started when my adult kids were little kids.The usual topics come up, of course: being together, good health, good news, good food. Naturally, one not-so-typical topic also has come up every year for nearly two decades: kidneys. So I decided to devote this Thanksgiving blog post to kidneys and living donation.

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I’ll start. I am thankful for

  • my right kidney (aka Righty). My son, Paul, is thankful for my left (both are doing well, thanks). Righty has managed to give me what would be a solidly normal kidney function for someone my age with two kidneys–and she’s done it all alone!
  • the transplant team at the University of North Carolina Kidney Center that supported both of us skillfully and caringly throughout the donation and transplant process 16 and a half years ago.

So much has happened in the field of living donation since then, and prospective donors can now take advantage of options that didn’t practically exist in the early 2000s. So, even though my family didn’t benefit, I’m thankful that the recent donors I know and the would-be donors who have written to me in recent years can. Here are just a few of those options:

  • Paired donation—not around when I donated—enables someone who isn’t a match for their intended recipient to donate a kidney to someone else to enable their recipient to get another, better-matched one, when he or she needs it. Often they donate to someone they don’t know–a “nondirected donation.”
  • Expanded financial assistance for living donors–including nondirected ones–to cover lost wages and donation-related expenses like travel, childcare, and eldercare. In addition to organizations such as the National Kidney Registry and the Alliance for Paired Kidney Donation (see Resources), a big federal program that for many years covered only travel expenses–the National Living Donor Assistance Center (NLDAC)–has substantially expanded its financial assistance in the past couple of years. Thankfully, we managed without all that back then, but our situation was a best-case scenario in many ways.
  • State-level living donor protections in 28 states, offering benefits that range from basic job protections to paid leave for state employees to tax credits. The list is growing while the federal version gets tantalizingly close to passage.

Now it’s your turn. If kidneys and/or living donation is a big topic in your house too, you might want to reflect on these worthy items for thanks giving after you finish your pie. Happy Thanksgiving to you and yours!

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

Contributor Spotlight: Emotional Challenges of Caregiving

Some people support living donors and transplant recipients not only on a practical basis but emotionally. Two of The Insider’s Guide to Living Kidney Donation‘s contributors are authorities on the subject. One is a licensed professional counselor, Kathleen Fitzgerald, whose clients often include families contending with the emotional fallout of kidney failure, transplant, or any serious chronic illness. The other, Sharon Williams, also has a professional perspective. She is a researcher who specializes in family caregivers for someone with a severe chronic illness.

Contributor Sharon Williams blows out the candles at a recent birthday celebration with family and friends.

Sharon also knows the subject firsthand, because for nearly 20 years she was a caregiver for her spouse while he was dealing with chronic kidney disease, liver disease, and later a transplant. In her chapter of the book, she explains that she eventually realized that her research hadn’t prepared her for the difficult emotional challenges of this kind of caregiving. She shares the valuable lessons she learned along the way. Spoiler alert: it’s wise to let the patient take the lead in planning how to proceed and be ready to support those very personal decisions.

Sharon has since transitioned to phased retirement, working roughly half-time until she retires from her current university position in two years. Today she enjoys spending time with family and friends, including her church family, “a blessing I treasure more and more each day.” Sharon also enjoy walks with her dog and dancing, especially line dancing.

Contributor Kathleen Fitzgerald counsels families facing emotional challenges of a health crisis.

Kathleen’s chapter describes the various ways that families contend with highly charged emotional situations related to health crises. She explains the diverse approaches people try–often unsuccessfully–and then offers helpful case studies of different scenarios, describing why some approaches were beneficial. These different perspectives will resonate with many readers–regardless of whether or not their family member is considering donation or transplant.

It all comes down to the undeniable truth that donation and transplant are far more than medical decisions and experiences. They touch families and friends in profound, multifaceted ways. The ripple effect extends far beyond the individual and even the family unit.

Be sure to read Sharon’s and Kathleen’s complete chapters. If you haven’t already ordered your copy of The Insider’s Guide, you can do so here.

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

Contributor Spotlight: Workplace Friends as Donors

Many people assume that you have to be a blood relative to donate your kidney to someone. And in the early decades of living donation, that was pretty much the case. Family members are still the largest single group of living donors, but the percentage of unrelated donors has been growing. This contributor spotlight highlights two of our book’s contributors who learned firsthand that a donor might actually be someone you know from work. (Afterward they often do feel like family.)

One of our contributors–Linda Watson–chose to donate to a colleague friend (my co-author, Betsy!). Another, Joe Reichle, instead received his kidney from a former student’s spouse.

Linda Watson and husband, Joel, on the Georgetown waterfront in Washington, DC

Linda had worked with Betsy for years before she learned how serious her friend’s health problems were. Still, as Linda relates in her chapter, like many people back in 2003 she didn’t realize that she herself could possibly be eligible to donate. But when she saw several other colleagues step up to be tested, she knew that this was what she wanted to do.

Linda explains that her decision also coincided with a time in her life when she very much needed to “do something life affirming.”

Receiving Linda’s kidney enabled Betsy to get off dialysis; produce urine once again (“I never thought I’d get so emotional about seeing a bag of urine,” Linda writes, describing her first visit to Betsy’s hospital room); and return to her position at the university full time. (About 17 years later Betsy would need another transplant–while our book was in production, in fact. Happily, she’s back to working full time again.)

Today Linda, who is in phased retirement from her work in speech and hearing sciences, clearly leads a full life. Besides gardening; traveling with her husband, Joel, albeit limited by COVID; singing in the choir and participating in other activities at her church, she recently tried her hand at voice lessons. She looks forward to traveling more extensively as the pandemic eases.

Joe Reichle has polycystic kidney disease, like many in his family, several of whom died relatively young. He begins his chapter by explaining that as a young man, he’d always figured that that would be his fate too. Instead, Joe, a retired university professor in the Midwest, led a normal adult life for 30+ years before the word transplant ever surfaced.

When Joe learned that the wait for a deceased donor kidney could be five years, he considered a live-kidney transplant in the hope of getting a kidney before he needed dialysis: a preemptive transplant. Knowing too that a living donation typically has a better outcome, he reluctantly let it be known that he needed a transplant (“I’m a person who doesn’t like to ask for things”). Joe relates in his chapter how surprised and moved he was to see colleagues and former colleagues seek him out, wanting to donate to him.

Many would-be donors were eliminated, and when a former student volunteered but later became pregnant, her husband fortunately volunteered to donate in her stead. Since his transplant, Joe says, despite other health issues, “for the most part, my health has been very good.”

He and his wife enjoy a comparatively quiet life in northwestern Michigan on East Grand Traverse Bay, where they enjoy photographing the wildlife, which includes bald eagles, red foxes, deer, chipmunks, raccoons, and the occasional bobcat.

They are less sedentary, he says, since the arrival of a lively two-year-old weimaraner-lab mix, named Rosie, who enjoys the water. Joe also still “dabbles” in intervention research for children with communication delays.

Even though Joe’s donor, Robert Drager, and family live far away in Pennsylvania, the two families often shared special occasions in the first several years and have stayed in touch.

Nearly 20 years post transplant, Joe has some words of advice to anyone considering a transplant, which he calls “one of the best decisions that I have made. Your quality of life will be significantly enhanced,” he says. And, as for your family, “they will spend less time worrying about you.”

We think those are both awfully good reasons.

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

Kidneyversary: 16 Years and Counting

In case you’ve only recently discovered this blog, you should know that I donated my kidney to my adult son, Paul, on June 27, 2006 (he shared his reflections in a 2019 post). This week we arrived at the Sweet 16 mark! Both of my kidneys, by the way, are still going strong, faithfully doing their job–just in different bodies.

The Comeback Kidney, as “he” was named, is healthy, and Paul’s overall kidney function is stable. Mine, happily, is perfectly normal, particularly considering that people’s kidney function declines with age, and I just turned 74. The other important measure is for creatinine–to show how well the kidney is filtering toxins–and I’m proud to say that mine is an impressive .84 (under 1.1 is normal for women).

So, 16 years out from donation, even though I’m a lot older than I was then, I’m very healthy and active (read: I walk and hike). I was never athletic, but lots of living donors are. If you’re a potential donor and have any concerns about donation cramping your lifestyle, learn about the Kidney Donor Athletes. They enjoy ultra-marathons, triathlons, and in March they celebrated World Kidney Day by climbing to the top of Mt. Kilimanjaro, Africa’s highest peak!

Our kidney celebrations are a bit more mundane. We went out to dinner to honor the occasion, as we do every year at this time. (The notable exception was, of course, 2020, when we “celebrated” the best we could in our front yard.)

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

A Big Week in the Life of a New Book!

A very big week for Betsy and me in garnering attention for our new book, The Insider’s Guide to Living Kidney Donation!

We taped two TV interviews: for ABC11TV (wIth Amber Rupinta, airing tomorrow, March 11) and for Spectrum TV (with Heather Fordham, airing next week)!

Plus the terrific article in Chapel Hill Magazine, by Renee Ambroso, is now out! Can’t wait to get my printed copy, but it’s online.

Living Donors Climbing Mt. Kilimanjaro?

Yes, you read that right.

In a recent magazine interview, I was explaining that I still lead a healthy active life, at 73, about 15 years postdonation. I was never an athlete, but I knew plenty of donors who ran marathons, I said. Being a donor typically rules out only activities like contact sports–and, say, mountain climbing, I joked.

Well, I’m happy to report that the joke was on me.

Twenty-two members of Kidney Donor Athletes from across the United States (and one from Canada), plan to do just that next month (March 2022). They’re training now to climb Mt. Kilimanjaro, Africa’s highest peak! I’m told you don’t need technical mountain-climbing skills per se for this one. However, you certainly need to be in excellent physical shape for any expedition that starts at the equator and gets colder and colder till it reaches the arctic zone at the top.

I was excited to see that one of the donor climbers, Matthew Harmody, hails from my state, North Carolina. In fact, he donated at the same transplant center as I did: the University of North Carolina at Chapel Hill.

Matt and I have something else in common: we both donated when we were in our late 50s. (More than a third of living donors are over 50.) Admittedly, that’s where the commonalities end. Unlike me, Matt is clearly no wimp.

Now 60, Matt, an emergency physician from Southern Pines, NC, was an endurance athlete (think ultra-marathons and 100K trail races) long before his 2017 donation. Also, he was a nondirected donor–he gave to someone he has yet to meet. (I gave my kidney to my adult son.)

Matt’s donation was in memory of his father, who had kidney failure and would not accept a donation from a family member (that’s not an uncommon parental instinct). “I felt that if I couldn’t help my father, I could at least make a difference in someone’s life with a non-directed kidney donation,” Matt explained.

Kidney Donor Athletes founder Tracey Hulick was also an ultra-athlete/nondirected donor in 2017. She formed the nonprofit in 2018 to encourage living donation and of course to inspire other athletes.

But why the dramatic One Kidney Climb?

“KDA is using this climb to bring awareness to living donation, demonstrate what is possible post-donation, and to launch initiatives which inspire, support and educate people about the experience of living donation,” according to the website. The March scheduling is significant: the group plans to reach the summit on March 10, World Kidney Day. (BTW, March is National Kidney Month in the United States.)

Come to think of it, Matt and I do have a few more things in common:

1-We’re both in excellent health, have good kidney function, and don’t see a nephrologist.

2-For pain relief, we opt for acetominophen (aka Tylenol) instead of ibuprophen (or other NSAIDS, which are all hard on the kidneys).

3-Most of all, we’re both champions for living donation.

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.

Kidney Donation: True or False

It occurred to me once again the other day that if we ever hope to increase awareness and encourage living donation, we still need to clear up a few misconceptions and teach the basics. Did you know the answers to these true or false questions?

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1—You have to be a blood relative to donate your kidney to someone.

2—You can’t lead a normal, healthy life with just one kidney.

3—Kidney donors can’t ever drink alcohol.

4—Living donors have to take medication for the rest of their lives.

5—Living donors need to see a nephrologist (kidney specialist) regularly.

Answers:

1. False. Though blood relatives have a higher chance of being a good tissue match, unrelated donors are a fast-growing group. And even if you are not a blood-type match, you can donate on behalf of someone in a paired donation–basically a swap.

2. False. Thousands of people are born with just one kidney and are perfectly healthy. When you lose a kidney, the other kidney takes on some of the function of the one that was removed. The result is sufficient to lead a normal life.

3. False. Alcohol is processed through the liver, not the kidneys. Living donors have no particular alcohol-related restrictions other than moderation and being hydrated.

4. False. Living donors who are otherwise healthy have no kidney-specific medications.

5. False. Healthy living donors have no need for specialized kidney care and are simply advised to see their primary care provider to monitor their kidney function and blood pressure annually.

Yup, all false. No doubt there are many more misconceptions about kidney donation. Check out the growing list of FAQs, and if you don’t see an answer to something you’ve heard, please let me know. It too may be a myth.

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.

Zooming into DC for a Unique Virtual Kidney Patient Summit

Instead of flying to Washington, DC, in March with other advocates for the National Kidney Foundation Kidney Patient Summit as planned pre-COVID, we Zoomed and Hopped in last week for virtual meetings on Capitol Hill. Admittedly, virtual was less of a kick than the real thing, but it was surprisingly effective in garnering cosponsors for important pieces of legislation.

I was excited to meet with members of Congress and/or their legislative staffers to share my personal story of donating to my son and to explain the importance of a few key pieces of long-overdue legislation: the federal Living Donor Protection Act (S511/HR1224), which prevents insurance companies from discriminating against donors (I’d earlier met with my state legislators about a state version); the Immunosuppressive Drug Coverage bill (S3353/HR5534), to safeguard a kidney recipient’s precious transplant by continuing coverage of antirejection meds for the life of the transplant, instead of cutting it off at 36 months for recipients not otherwise Medicare eligible.

Given that chronic kidney disease is so widespread–about 37 million Americans have it–and underdetected–the vast majority of them don’t know it yet–we’re also asking for funds for a new Kidney Risk Campaign.

“Are You the 33%?” is a simple quiz to help raise public awareness that one in three people in this country is at risk for kidney disease. Actor/advocate Wilmer Valderrama is helping to spread the word in both English and Spanish. The risk is particularly high among African Americans and Hispanics.

Perhaps the highlight of our eight meetings was the one with my long-time congressman, Rep. David Price, who has been very supportive of the kidney community. He’s been a cosponsor of the Living Donor Protection Act for a long time and just agreed to do the same for the Immuno Drug bill! If there’s an appropriations bill before year’s end, he was also receptive to supporting the Kidney Risk Campaign funds.

Here I am meeting with Rep. David Price, his legislative director, Nora Blalock–thank you both!–and my fellow NKF advocates.

I learned a lot and “met” a lot of interesting, extremely dedicated people, like my joint North Carolina-Georgia teammates pictured here: Stuart Miller (a transplant recipient who led our group) and Cara McKinney (NKF’s exec director for Georgia, Alabama, and Mississippi) from Georgia; and, from NC, Michael Phillips, a transplant recipient who survived COVID (sadly, 20 of his relatives also contracted it); and Chris Rusconi, chief research officer for the Polycystic Kidney Foundation, a fellow Triangle resident.

We raced from meeting to meeting by catching a Zoom. It was hectic but very gratifying (and my feet didn’t hurt one bit!). Afterward we compared the day’s highs and lows with other advocates. It all definitely whet my appetite for repeating this experience in person someday.

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:

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“… 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

Donors Need to Know All the Good News, Too

I just saw that this site’s views for April were the second highest since I launched the website 14 months ago. I noticed something else: the record month, October, happened to feature the same blog I posted about last week on Twitter and in a couple of living kidney donor support groups on Facebook: “Just How Unlikely Is It for a Donor to Need a Transplant?” (spoiler alert: very!). The obvious explanation here is that everyone loves good news, but the less obvious realization was that so many kidney donors didn’t already know that.

It’s important for living donors and potential living donors to have all the facts, including the bad, of course. But informed consent means it’s just as important that everyone know the encouraging news about living donation without sugarcoating it.

Another example of “neglected good news” is that the lower kidney function that’s common among living donors does not mean we have stage 2 or 3 kidney disease. eGFR, the scale that estimates overall kidney function and level of chronic kidney disease, really speaks of people, usually with two kidneys, whose kidney function is in decline. Donors, on the other hand, once they stabilize after donation, hit a new normal, which, in the absence of other indicators, is perfectly fine.

More important is the creatinine reading, which indicates level of toxins and reflects how well the kidney is working. For example, nearly 14 years after donating to my son, I still have an excellent creatinine level (0.85 on a recent test)–not just excellent for a donor, excellent for anyone!

I’m all for learning all the information that’s out there, and hope to see long-term lifetime follow-ups on all living donors. But in the meantime, we can all use a little reassurance these days. Let’s take it where we can.