Congratulations, Daryl Hall! Wishing You a Speedy Recovery

I love it when celebrities let it be known that they have had an organ transplant or have donated. When singer/songwriter Daryl Hall posted the following on Facebook late last month, I was sorry to see the news but pleased that the surgery had gone well–and frankly delighted that the cofounder of Hall & Oates had decided to share it publicly.

Soon after Stevie Wonder had his successful kidney transplant in 2019–also from a living donor–I used the speculation about his mystery donor as a teachable moment to clarify what we could and could not assume. Did it have to be a family member? A man? An African American? A young person? Read it to find out.

Many other celebrities in music, sports, and television and film have had organ transplants (or, like actor Jesse Eisenberg, have been living donors). Every time one of them announces the news, more people read those stories and learn about donation than ever would have otherwise.

Even though chronic kidney disease is more common than breast cancer or prostate cancer, the general public knows very little about it. If more celebrities who’ve been touched by kidney disease and transplant would openly talk about 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.

Celebrities, please help us demystify this important subject by sharing as much as you feel comfortable doing about your experience. Speedy recovery, Daryl!

You can learn more about kidney donation by exploring this website and checking out my book, The Insider’s Guide to Living Kidney Donation, and my blog posts.

Our 20th Kidneyversary!

Drumroll, please! Twenty years ago today, my adult son, Paul, and I walked into the UNC Transplant Center with four kidneys between us. When we left a few days later, we still had four—but he had (has) most of them. I’m happy to report that my two are doing well in their respective current homes. To celebrate I’m offering the book I co-authored with Betsy Crais, The Insider’s Guide to Living Kidney Donation, at 30% off (use promo code 20YEARS at checkout)!

The intervening years have presented their challenges for Paul—particularly due to his suppressed immune system, which keeps him from rejecting my kidney. But today my left kidney–the one we affectionately call his “comeback kidney”–is doing a masterful job.

And my “righty” is doing well! I have normal kidney function, and, at 78, I’m healthy and active. Just ask my Zumba classmates! I need to remember to stay well hydrated and to eat well. I have annual lab work to check my creatinine, which reflects how well my kidney is filtering toxins. I don’t have kidney meds, I don’t have a special diet, I don’t see a nephrologist (kidney doctor).

My right kidney got bigger and took on much of the job of the one I gave away. For more information about Righty, check out my playful homage to “her.”

Congratulations, Paul!

You can learn more about kidney donation by exploring this website and checking out my book, The Insider’s Guide to Living Kidney Donation, and my blog posts.

Can You Pass My Simple Quiz for Donate Life Month?

If you’re like most people–myself included until I was in my fifties–“donate life” simply conjures images of a little heart on your driver’s license to say you’re an organ donor. Most people have it. No big deal.

It’s not that simple. On this last day of Donate Life Month, I thought I’d throw out a few important facts about organ donation to see how much you know about it. Test yourself—and let me know how you did! (Not to worry–I’ll grade on a curve.)

big bright buttons on beige backg — Photo by Ann H on Pexels.com

1-How many people are waiting for an organ? Most of the 103,000+ people on the national waiting lists for an organ from a deceased donor are waiting for a heart. True or false?

False. More than 80% of them are waiting for a kidney.

2-In the United States, the wait for a kidney from a deceased donor is a matter of months. True or false?

False. In many areas of the country, it can be 5 to 10 years.

3-Every year a few hundred people die because they didn’t receive a lifesaving organ in time. True or false?

False. Nearly 5,000 people on the wait lists die while waiting for a kidney each year.

4-Who can be an organ donor? A large percentage of people in the United States can be organ donors when they die. True or false?

False. Only about 3 in 1,000 people die in such a way that they can be organ donors: generally, in a hospital following a trauma such as a car accident. That’s just 0.3% (yes, I had to look it up).

5-Most living donors are men. True or false?

False. Nearly two-thirds of living donors are women.

If you’re not already a registered organ donor, you needn’t wait till you renew your driver’s license. You can do it online right now at registerme.org or many other websites. (There you’ll also find more facts about organ donation.)

So, if you’d ever wondered why the wait for a deceased-donor organ is so long, and why donation advocates wish more people would consider being live donors like me, now you know the bottom line. There simply aren’t enough organs available for everyone who needs them.

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website and my articles at Medium.com/@caroloffen.

Amping Up the Advocacy in Music City

Capitol Hill kidney summits–like the most recent one I described in my last post–typically draw more than 100 advocates from all over the country. The events are exciting and always include a day of informative talks, valuable training, and practice. It’s a tight program focused on the day of imminent meetings ahead, and there’s inevitably some anxiety about schedules and security lines if not the meetings themselves. So it was a real treat to be able to discuss advocacy at a more leisurely pace this week in Nashville with a smaller group of advocates from the region: American Kidney Fund Ambassadors.

The AKF advocacy team prepared an interesting day-long agenda, which left me motivated to (1) do the online training to become a kidney health coach and (2) think about someday pulling together a local advocacy event. And, as always, I left with admiration and fondness for my fellow advocates.

There I met up with living donor Stormi Murtie (center of pic), whom I’ve written about here (stepson Brecon is unfortunately back on dialysis and working full time while waiting for another transplant). I spent the most time with Stormi and Crystal King, a transplant recipient I’d met at a previous AKF event. I knew that Crystal’s quest for a transplant was several difficult years in the making. What I didn’t know is that she was one of the many casualties of the old race-based calculation used to designate kidney function (eGFR).

Under the old system used until 2022, lab results for creatinine (the level of waste products in the blood) showed different estimated kidney function for African Americans and non-African Americans. In other words, the same creatinine reading that might indicate kidney failure in a white woman, for example, was considered higher functioning in a black woman, based on assumptions about differences in muscle mass.

In practice, that misclassification meant that Crystal’s eligibility for a transplant was delayed by about three years. Her transplant was further delayed by the start of the covid pandemic when centers temporarily halted transplants. Fortunately, Crystal ultimately received a kidney from a living donor.

Today she’s a healthy, active, and effective kidney advocate. She’s the founder/director of the Kidney Champion Foundation, a nonprofit dedicated to helping historically marginalized and underserved communities of people living with kidney disease.

I am always honored and inspired to spend time with such remarkable, dedicated, and warm individuals in the kidney advocacy community.

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website and my articles at Medium.com/@caroloffen.

Winging It on Capitol Hill But Flying High

Participating in kidney advocacy summits in Washington, DC–whether for the National Kidney Foundation or American Kidney Fund–is always fun and gratifying, some years more than others. This month’s NKF Kidney Patient Summit was a bit different in its unpredictability.

Our stalwart North Carolina team–Alan Levy, Dre Roundtree, and wife Necole (a de facto member), pictured below– had to wing it for the most part. Legislative meeting schedules are always subject to last-minute changes, both cancellations and confirmations. So we weren’t surprised to see that two of our three meetings were still listed as TBD, plus one information drop-off, when we arrived in DC. When the morning of the Summit arrived, though, all we had scheduled was one sit-down meeting.

Fortunately, it was a very good one, at the office of my congresswoman (Valerie Foushee, NC-04), a longtime supporter of the kidney community. Her legislative director, Sarah Izaak (the person not wearing an orange NKF shirt, above) was well informed and very engaged.

But only one meeting?

We didn’t come all the way to our nation’s capital just to catch up with advocate friends from previous summits, enjoyable though that always is.

So we got a list of NC legislators, split them up, and grabbed a pile of information packets to leave with our representatives. At the very least we could provide info that they wouldn’t have received otherwise–along with the personal touch of a hand delivery.

At best, maybe we’d score an impromptu meeting, albeit with an unpredictable reception.

I hit the jackpot! Not only did I manage a discussion with staffers for all four on my list: Reps. Deborah Ross, Don Davis, Addison McDowell, and Pat Harrigan, but they were all thoroughly interested and engaged. I even had photos taken at all but Harrigan’s office. (It was the first on the list, and I was so excited at my good fortune that I completely forgot to ask to take a photo.)

Left to right: with Isabella Montini, legislative fellow; with Zoey Young, scheduler/exec assistant; with Rune Moore, legislative director. Camera shy: in Rep. Harrigan’s office, I spoke with Tom Rigali, senior legislative assistant, and Milka Jurado, director of operations.

The Patient Summit Reception, always held the evening before we head off to meetings, is always memorable. This year NKF honored two advocates: my teammate, Alan Levy, won the prestigious Richard K. Salick Patient Advocacy Award. Alan was gracious enough to acknowledge the support of fellow advocate Thelma Barber and me in his speech (she and I both teared up). We got a pic of the three of us.

A new award, the Kidney Champion Award, went to NFL player Khalen Saunders, founder of the Original Element Foundation.

Khalen, who uses his platform to support important causes, has done public service announcements for NKF to spread awareness about kidney disease. In his acceptance speech, he movingly described his mother’s struggle with kidney disease and the dramatic difference that her transplant made. (Kim Hamilton, his mother, stood nearby.) Among the lines in his speech that stayed with me: “Strength isn’t about lifting weights,” he said. “Strength is sitting in a dialysis chair and not giving up…”

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website and my articles at Medium.com/@caroloffen.

Action Needed–Living Donor Protection Act Advances

Oh boy, is this painful! It may be the slowest sausage ever made.

The Living Donor Protection Act, which would simply protect discrimination against living organ donors by insurance companies and in employment, has been introduced in every session of Congress since 2014. It’s bipartisan, noncontroversial, and doesn’t cost taxpayers anything. It’s been on our list of “asks” in virtually all of my Capitol Hill advocacy meetings since 2020.

We finally have a critical breakthrough, but we need everyone’s help.

After getting oh-so-close to a committee hearing in the last session of Congress, the LDPA had to be reintroduced in this session (S. 1552) and then wait for a committee hearing. It’s now scheduled for “markup” with the Health, Education Labor and Pensions Committee Executive Session for Thursday, February 26th.

A “markup” mans that the committee will officially consider, possibly amend–basically hash out the details (we all know that’s where the devil lies)–and vote whether to move it on to the full Senate for a vote.

If your senator is among the following committee members, please contact him or her today and urge them to advance this important legislation during the executive session.

Republicans: Bill Cassidy (Chair), Rand Paul, Susan Collins, Lisa Murkowski, Markwayne Mullin, Roger Marshall, Tommy Tuberville, Tim Scott, Josh Hawley, Jim Banks, Mike Crapo, Marsha Blackburn.

Democrats: Bernie Sanders (Ranking Member), Patty Murray, Tammy Baldwin, Chris Murphy, Tim Kaine, Maggie Hassan, John Hickenlooper, Edward Markey, Andy Kim, Lisa Blunt Rochester, Angela Alsobrooks.

Here’s a sample email that you can revise as needed.

Dear [Senator’s name],

As your constituent and a living organ donor [or a family member/friend of a donor or of a potential recipient], I urge you to support the Living Donor Protection Act, S.1552, during the HELP Committee’s February 26 Executive Session. This critical legislation safeguards the rights of living donors by ensuring they are not discriminated against in terms of life, disability, and long-term care insurance. It also clarifies that FMLA rights apply to living donations.

Living donors save lives and reduce healthcare costs. However, without federal protections, donors face insurance and job security challenges after donation. This bill offers the protections current donors need, and it removes potential barriers for future donors.

Please take action now to pass the Living Donor Protection Act.

Thank you!

Sincerely,[Your name]

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website and my articles at Medium.com/@caroloffen.

Belated New Year’s Resolutions, Whether You Have 1, 2, or 3 Kidneys

I know it’s a bit late for resolutions but better late than never is always my motto.

Every year before I make new ones, I look back to see how I did on last year’s. Alas, they’re almost always still relevant. I don’t think I’m unusual in that respect. I know, for example, that my Zumba classes and the workout area of my gym are more crowded these days. I used to be alarmed about it but soon saw that in a matter of weeks, the crowds invariably start to thin. By late February they’re always back to near-usual levels.

So, once again I’m dusting off my old new year’s resolution blog post with a few updates. They’re relevant for everyone–whether you’re a living donor, like me–or never plan to be–or you’re a kidney transplant recipient like my son.

If you’re already being evaluated as a living donor–yay!–or even just thinking about it, the following suggestions will benefit you and your kidneys–however many you have and wherever they happen to be.

1- Take good care of yourself (and your kidneys). That means

–Exercising regularly. My retiree friends all seem to be obsessed with pickle ball, but I’m sticking with Zumba and, slowly coming around to, regular strength training.

–Getting plenty of rest. Alas, that’s a tricky one for many if not most of us. We can at least follow the simplest rules of sleep hygiene: no screen time a couple of hours before bedtime, no late meals, and avoid caffeine and alcohol late in the day. Also be sure to factor in some quiet downtime before bed.

–Staying hydrated. This one was reinforced for me again recently when I had another scare about my kidney function.

–Eating a healthy diet. Mostly that means a balanced diet with fresh foods–no extremes on any component including protein. And avoid ultra-processed foods!

2-Getting the latest Covid booster for which you’re eligible (for your own safety and your potential future recipient’s). Many people who were vigilant about that earlier have slacked off, but Covid has not disappeared–I have a few friends who can personally attest. The boosters are still important! Also, transplant recipients, like my son, and anyone else who is immunocompromised, such as people with cancer or autoimmune diseases, can’t count on full protection from the vaccines.

It’s all the more important that the rest of us add that extra layer of protection.

3-Avoid ibuprofen and other NSAIDs. They’re hard on the kidneys for anyone. That becomes particularly important if you’re a current or potential donor or recipient.

4-Learn all you can about kidney function and get yours checked. Kidneys are amazing–read about my righty!

5-Read up on all facets of kidney donation. For example, order a copy of The Insider’s Guide to Living Kidney Donation.

I’m obviously not the first, so let me be one of the last, to wish you and your family a happy, healthy new year!

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website and my articles at Medium.com/@caroloffen.

Holiday Gifts about the Greatest Gift

If you’re still looking for ideas for a holiday–or any kind of–gift, consider a batch of my personal favorites on my favorite subject. A couple of years ago,I described several here, and they’re still books I regularly recommend. I also have a few to add:

Ascending America, by Matt Harmody, just came out in November. Before I read this beautiful book about living-donor mountain climbers and world records, I didn’t know a thing about mountain climbing and had no particular interest in it. But as a living kidney donor/advocate, I, of course had to check it out. I’m very glad I did.

I wrote about the author here a while back when I did a post about living kidney donors climbing Mt. Kilimanjaro in 2022. This time Matt was part of a team of living donors who broke a Guinness world record by climbing 50 state summits in 43 days! The riveting text explains just enough about the technical parts of climbing to grasp the exciting situations but not enough to bore the layperson.

And readers who are more interested in the climbing will also learn about kidney donation–as much or as little as they’d like, because the short, specific, and very accessible chapters are designed for easy reference. A retired emergency physician, Matt knows how to explain medical information to make it understandable to the rest of us. For readers who want to delve further, the chapters have extensive footnotes.

The donor team’s message is that even living donors who were ultra-athletes before donating needn’t fear that donating will necessarily alter their active lifestyle. My only caveat in writing about these amazing advocates is the need to continually remind readers that you don’t need to be a mountain climber-type to be a living donor. Living donors aren’t a breed apart–most of us are simply very healthy, caring individuals who were touched by someone’s need and were in a position to do something about it.

Because of Organ Donation: The Ripple Effect of Hope Continues, by Brenda E. Cortez. I’ve written about Brenda before, with her HOWL the Owl children’s series on donation and the first Because of Organ Donation.

The latest edition first came to my attention because of my interest in one of the contributors, Stormi Murtie. I wrote about Stormi’s tireless efforts to donate her kidney to her firefighter stepson in another state. His rare, life-threatening disease had drastically reduced his chances of finding a match. Her chapter evocatively details the anguish and frustrating delays they experienced, which were exacerbated by the terrible timing: the early phases of COVID.

Ultimately, Stormi’s stepson received a deceased donor transplant [which, sadly, failed after two years, so he is once again in need of a donor]. By then Stormi was determined to donate anyway and did it through a donor exchange program. The book’s companion chapter was written by her grateful recipient’s wife, who was also a living donor in an exchange. The families have become close.

The warm bond and resulting close relationships between donor and recipient families is a familiar theme in these stories and in those of so many donation advocates I’ve met.

One particularly memorable chapter is by a woman whose family lost their adult son in a tragic ski accident. She describes the remarkable and unexpected relationship that resulted when their son’s liver matched with a young man who lived nearby. When his wife gave birth to twins, they warmly accepted the older couple as their children’s adopted grandparents. The couple continues to be actively involved in the growing children’s lives, one of whom was named after the donor.

As in the first book, the contributors bring a wide variety of perspectives and write movingly about their donation/transplant experiences. I’m reminded that despite the similarities, no two donor-recipient stories are the same, and I always learn something from them. I’m also invariably inspired by people who have repeatedly experienced life-threatening episodes and choose to devote much time and energy to advocating for donation.

I previously reviewed here Understanding Living Kidney Donation, by Glenna Frey, a nephrology nurse who is also a living donor; it’s an excellent and comprehensive book on kidney disease and donation; and Gifted, by Robert Horsey, which, unlike the other books, is a poignant novel. It’s inspired by the author ‘s professional experience and commitment to donation as an organ procurement coordinator.

And if you’d like to gift my book, The Insider’s Guide to Living Kidney Donation, you can take advantage of the current 25% off on the paperback by using promo code HOLIDAY at checkout at this link.

NC Will “Soon” Have a Living Donor Protection Act!

It’s so close I can taste it.

I actually wrote much of this blog post in late June thinking it was days away, then put it aside thinking I’d wait till it was official that North Carolina would join the other 35 states that currently have living donor protections.

I decided not to wait because nearly three months later, it’s still not official–though it’s closer than it’s ever been.

NC Senate Bill 101 is currently in the Rules Committee of the State Senate just to approve the changes made to the bill by the House. It shouldn’t take long but…

We–donation advocates, donors and recipients alike–have been working to prohibit discrimination against living donors by insurance companies and to provide various job protections for several years. I personally have been in the fight since 2019.

Nearly six years ago, I first met with a NC state legislator (Rep. Willingham, center of photo) and several aides for other lawmakers at the General Assembly; five years ago I had coffee in district with a state legislator; four yeas ago I gave public comment; three years ago I attended a legislative breakfast with a few state legislators to give them a personal perspective on living donation. Throughout, I’ve made countless phone calls and written several blog posts to demonstrate support.

Each legislative session, we thought this would be the one, we’d finally make it–only to miss out at the last minute and we’d need to start from scratch in the next legislative session. Last year it was because a feud between state legislators had led one of them to block the bill.

And then, in June, to my shock and delight, I learned in a meeting that the General Assembly had just passed the bill. I couldn’t find anything online about it as it went through its final formal paces.

Then about a month later I learned that it was headed to the governor’s desk, awaiting his signature.

It wasn’t.

There’s one more hurdle: the Rules Committee, which is where it’s been sitting since late June.

So this week, along with other advocates, I called the bill’s primary sponsors to urge them to try to persuade the Rules Committee to bring it to a vote.

If you’re in North Carolina, please contact your state senator and ask them to do the same. Note that this bill has been approved by both the House and the Senate.

For living donors in the state, I’m happy to report that the bill goes a little further than the national version that’s been hiccuping through Congress since 2014. The NC version gives public employees two weeks of paid leave to donate. In addition to protections for living donors, the bill protects tax-advantaged accounts such as college tuition programs and ABLE accounts for individuals with disabilities.

Here’s hoping that the next post I write on this topic will be a clear-cut triumphant one.

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website and my articles at Medium.com/@caroloffen.

An Important New Book: “Understanding Living Kidney Donation”

As a living kidney donor to my son, I can certainly attest to how rewarding, gratifying, meaningful and life changing the experience usually is. It’s also really complicated.

It would be complicated under the best of circumstances because, as we make clear in The Insider’s Guide to Living Kidney Donation, being a kidney donor is not just a medical decision. It has emotional, social, familial and financial ramifications. That’s why, in addition to information and resources, we included first-person accounts of people with different perspectives on the process.

The innate complexity of the experience is of course further complicated by the medical complexities of donor-recipient matching and the daunting intricacies of this country’s organ allocation system.

Perhaps, like me, you have a loved one who needs a kidney, or you know someone who’s donated and you know how much it meant to them, whether they gave to a family member or to a stranger. So you’re seriously considering taking this important step yourself.

Learn everything you can about it.

So–assuming you’ve already read our book!–go immediately to Glenna Frey’s excellent, extremely thorough new book. In clear, nontechnical language, she succinctly explains kidney donation, kidney disease and treatments and lays out all the stages in the donation process in detail, helpfully summarizing everything at the end of each chapter.

Glenna is a living donor herself and a well-known donation advocate. She co-founded Kidney Donor Conversations with daughter Amanda to educate people about kidneys and donation. Like my friend and co-author, Betsy, Glenna’s family has been touched by Polycystic Kidney Disease (PKD). Her husband is doing well on his second kidney transplant, and Amanda also has been diagnosed with the hereditary disease.

Glenna’s interest and expertise in the subject stems also from being a nephrology nurse for forty years, both in a transplant unit and in dialysis clinics. Given her dual personal and professional perspective, the accuracy and thoroughness of the information was not surprising. But I suspect that the refreshing clarity and accessibility of the text may also owe something to the influence of Amanda, whose career as a therapist has made her adept at making advanced concepts more accessible to lay readers.

Kidney donors need to be prepared with as much information as possible. This book belongs in any prospective donor’s library.

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website and my articles at Medium.com/@caroloffen.