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.

Reimburse Living Donors’ Lost Pay–and More

Several months ago I was excited to learn that financial assistance for living donors was going to be substantially expanded—encompassing more people and for more kinds of noncovered expenses, like lost wages, childcare, and eldercare. As a living donor and advocate, last year at this time I provided public comment on the subject and followed up with emails to members of Congress. In July the incredible Executive Order on Advancing Kidney Health touted a major expansion of reimbursement for donor expenses, in addition to efforts to improve early detection of chronic kidney disease, encourage medical innovation, and lots more.

The devil is always in the details, which take time. Ever since, I’ve been eagerly awaiting the good news. The current financial eligibility limit, at 300% of poverty line (or $38,000), has long been way too low. Advocates have argued persuasively for increasing that to 500% ($64,000)–ideally 600%–to be able to serve the majority of living donors rather than a small fraction. For donors who don’t have paid sick leave, these extra expenses are often a deal breaker for people who might otherwise volunteer to save a life by donating their kidney.

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The proposal they came back with this week offers just pocket change: a tiny increase in the eligibility cutoff to 350% (or $45,000)!

Also, wait for this: the assistance is still tied to the recipient’s income, not the donor’s. So it does an injustice to both potential donors and recipients by putting the onus on the latter to reimburse the donor for nonmedical expenses (testing and surgery are covered by the recipient’s health insurance, be it private, Medicare, or Medicaid). The government apparently thinks it reasonable that the family of the recipient, desperately trying to find a living donor and incurring all sorts of costs themselves, when they’re facing major surgery, should have to worry about trying to reimburse their potential donor.

There’s another glitch in tying eligibility to the recipient’s income—what about nondirected donors (those who decide to donate to an unknown recipient they may never meet)? They’re out of luck here. Now, wouldn’t you think you would want to roll out the red carpet for these Good Samaritans instead of shutting an aid door in their faces?

The Executive Order was clear in its intention to expand assistance to encourage living donation. So if you’re a donor or are considering donating–or you’re a kidney patient looking for a donor…please email Frank Holloman at donation@hrsa.gov and tell him that HRSA (the federal Health Resources and Services Administration) needs to go much further in supporting living organ donors. Come to think of it, no matter what your connection to living donation is, contact HRSA, please!

“Why I Advocate” (the Video)

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.

With my son (Paul) and husband (Neil) at an NKF Kidney Walk in Durham, NC, in 2016.

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!

Watch my brief video to see why. (And yes, I even managed to make a video on my laptop!)

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

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.