Contributor Spotlight: All in the Family

I explained in our first Spotlight on Contributors why we devoted a whole section of our book, The Insider’s Guide to Living Kidney Donation, to family dynamics. The chapters by the following two contributors–Monica Sheppard and Daniel Ranch–illustrate how different families handle medical crises differently, yet with some surprising similarities, regardless of their background.

Monica Sheppard, a research analyst who lives in the Baltimore area with her husband, Reggie, donated to her mom, who, she says, had always been a “giver.” Even though her mother tried to downplay the urgency and the discomfort of her kidney failure, Monica and her brother instinctively recognized the critical need and volunteered to be tested to be a living donor. Monica made the cut.

As an African American, Monica initially feared that her friends and relatives might be negative about her plan, because organ donation, particularly live donation, is uncommon in the African American community. Instead, as she relates in her chapter, she was able to turn their hesitancy and natural concern into a learning experience. With a better understanding of living donation, in fact, a few people shared that they might even consider the idea for themselves someday. (A good friend later became a nondirected donor!)

Today Monica, who donated her kidney nearly 14 years ago, leads an active personal and professional life. She’s coming up on 20 years at RTI International, where she co-leads the Emerging Equity Scholars program. She and husband Reggie are enjoying resuming travel and have an upcoming trip to Mexico. In her quieter moments, Monica is an avid podcast and audible book listener.

Aside from the cultural pressures that Monica feared, for most couples and families touched by kidney disease, the medical aspects of the experience are frightening unknowns. But even for couples very familiar with their options, like physicians and med students, the experience can be overwhelming and similarly scary.

Daniel Ranch, now a pediatric kidney specialist himself, donated to his wife, Kana Kornsawad, in 2009, soon after they had both finished med school. As Danny relates in his chapter, instead of listening to the experts who told the couple that Kana’s kidney disease was progressing fast, they went looking for other opinions. In hindsight, he admits that their years-long delaying actions were futile–“but doctors are human too, and in times of crisis, we will cling to any shred of hope, same as anyone else.”

Fortunately, Kana was ultimately able to get her transplant in time–with her husband as her donor–and his kidney has served her well. Interestingly, she and Danny both care for transplant patients in their respective careers (her specialty is Internal Medicine). We know that in addition to skill and caring, they both surely bring a deep understanding and empathy to their interactions with their patients.

With the pain of those difficult pre-transplant years receding from memory, today Danny and Kana still share a love for their work and for each other. They spend their little free time happily walking their “pampered” dog, Camille, together in the woods and neighborhood parks.

Read Monica’s and Danny’s chapters in The Insider’s Guide to Living Kidney Donation.

For more information about the book, donation-related resources and FAQs, plus other blog posts, be sure to explore my website.

A Virtual Trek for Transplant

I’ve been on vacation and haven’t been here in a long while. What did I miss?

One cool activity that I know is already under way is the Trek to the Games (that’s the Transplant Games 2022, which will be held July 29 to August 3 in San Diego). California is a long way from my home base in North Carolina, so I won’t be at the Games in person, much as I’d love to. But this is a virtual trek: a fun, creative way to raise awareness of and educate people about organ transplantation.

It’s the brainchild of Transplant Trekkers, fellow living donors, kidney recipients, professionals, and advocates for donation. You may recall that that’s the San Diego-based re-formed group of the original WELD (Women Encouraging Living Donation).

The Trek started June 1 but runs through August 4. That means that if you’re interested, you can still join the journey a bit late, like me. My favorite activity–and the way I’ll be making my way on the roughly 3,000-mile virtual trek from New Jersey to California–is by walking outdoors; for my husband, it’s running; for my friend Sharon, it’s swimming and cycling.

Whether your favorite activity is one of those, or gardening or pickleball or whatever, you can participate by entering the “miles” you run/walk etcetera (there’s a conversion chart) in a digital chart that’s then displayed on a map of the country.

Just go to the Transplant Trekkers website for complete information and registration ($10). You’ll be asked if you want to join a team (mine is the Cheetah Trekkers). You can join mine or another–or participate on your own.

The hope is to involve people who know little or nothing about transplant, because participants will learn fun facts about organ transplantation and donation along the way. Everyone is encouraged to invite friends and family who are simply active and maybe intrigued by this adventure.

I have to go enter my miles now. Hope to see you en route!

Another Donate Life Month Quiz

On the last day of this special month, I came across a brief Donate Life Month Quiz I posted a few years back. Happy to see that it’s still accurate. I thought I’d add a few updates:

Photo by Olya Kobruseva on Pexels.com

1–To be a living kidney donor, you have to be (a) young, (b) a family member of the recipient, (c) brave, (d) all of the above, or (e) none of the above?

(a) Wrong. I was 58. In fact, more than a third of living donors are over 50.

(b) Wrong. Though the largest group of donors are indeed family members, unrelated donors are an increasingly large portion of living donors.

(c) Wrong. “Brave” is certainly not a word ever used to describe me! As a self-described wimp, I relied heavily on my supportive and caring transplant team, who did all they could to accommodate my needs and concerns. The experience proved to be much easier than I expected (certainly easier than childbirth!).

(d) Wrong.

(e) Bingo! Happily, none of the above.

2–To qualify for financial assistance from the National Living Donor Assistance Center, (a) a donor has to be related to the recipient, (b) you can’t be a nondirected (aka altruistic) donor, and (c) you and your recipient must be U.S. citizens.
All false. If you’re not U.S. citizens, however, both recipient and donor must be “lawfully present residents.” As I explained in my last post, NLDAC has greatly expanded its assistance for living donors, and more people qualify than ever before. Be sure to check out the guidelines.

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.

More Living Donors Could Get Financial Help!

High on the list of ways to encourage living donation (after educating people about living donation, of course) is to make the experience financially neutral. That is, not that live donors earn money for their organs (though some experts have made a case that that actually might be done efficiently and fairly)–only that no one lose money in trying to save someone’s life (I think we can all agree on that part).

Well, guess what? A major source of aid, the federally funded National Living Donor Assistance Center, says that about 70% of U.S. households meet its income requirements to apply for living-donor financial aid.

If you already know that the recipient’s insurance (including Medicare) covers the donor’s evaluation and surgery (and some major insurers now cover travel expenses), you might wonder why a donor would need additional financial assistance. Let’s consider all the things that often need to be in place for someone to donate–apart from a clean bill of health and matching-related issues.

1–What if a donor lives hundreds or even thousands of miles from the recipient’s transplant center? Transportation and lodging expenses for a few days of evaluation plus surgery and post-op time can add up pretty quickly. They can easily be a deal breaker.

2–What if a potential donor doesn’t have paid sick leave? Two to four weeks lost pay for recovery plus time off work for evaluation tests and appointments can be prohibitive. So, covering lost wages is crucial.

3–And what if the donor needs to pay for childcare or eldercare for those weeks? That could clearly tip the balance, so reimbursement of dependent care expenses is right up there too.

Fortunately, not all donors require all three of those essentials. Back when I donated to my son in 2006, we were lucky that the transplant center was right in our town, I had sufficient paid leave between my own plus my colleagues’ kind shares, and we had no dependent care expenses.

Photo by Pixabay on Pexels.com

But for people who do, any one of those factors could nix the idea for donors who are otherwise eligible. Such expenses can run into several thousand dollars. Happily, NLDAC grants, usually in the form of a prepaid credit card, are sizeable: up to a total of $6,000 per donor.

You can download guidelines and application forms from the NLDAC website. Funds are available only for those donors who have no other reimbursement options, be it insurance, state or federal funding, or (for me, this is the part that still rankles) the recipient’s funds. Both donor and recipient must provide income and asset information, but the recipient’s matters most. I guess the assumption is that recipients “should” reimburse their donor if need be.

True, if a recipient doesn’t meet the guidelines but says he or she can’t afford to reimburse the donor, there’s a hardship exception, requiring more paperwork. In other words, at a time of ill health, lost wages, and great family stress, the recipient is expected to prove that he or she can’t help the donor. Shouldn’t the donor’s income be the major factor if we want “to reduce the financial disincentives to living organ donation” (per NLDAC’s mission statement)?

NLDAC has been a major source of financial assistance for nonmedical aspects of donation for many years. Until late 2020, that assistance was mostly limited to travel and lodging, so as a donation advocate, I certainly applaud the major expansion.

NLDAC needs to get the word out so more potential donors can take advantage of this much-needed additional assistance. I’m happy to help. Please do pass it on!

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.

Contributor Spotlight: Doing All They Can to Help Donors Donate

Some of the most dedicated, ardent advocates of living donation I know are neither living donors nor transplant recipients themselves. That’s surely the case for these two contributors–Tammy Wright and Jenine Lewis–to our book, The Insider’s Guide to Living Kidney Donation.

For Tammy, who has helped donor and recipient pairs as a transplant coordinator for nearly 30 years at Sharp Memorial Hospital in San Diego, it’s a profession she deeply loves. For Jenine, who came ever so close to donating one of her own kidneys, it’s a passion and an avocation.

Tammy Wright, a veteran donor nurse coordinator.

You may think that once someone is approved as a donor, it means smooth sailing ahead and just depends on everyone’s schedule. Alas, that’s not the case for many donors and recipients. Even before COVID came along, life always had a way of throwing complications in people’s paths even when the stakes are frighteningly high.

Example? Recipient gets so sick before the scheduled transplant that it has to be postponed indefinitely. Or donor gets the flu and needs to reschedule. Or an overweight donor learns that he’s prediabetic and has to start an extended period of dieting and nutrition counseling. I could go on.

In Tammy’s book chapter, “Helping Overcome Transplant Obstacles,” she relates several daunting situations she has helped her patients navigate. Many of the creative solutions she draws on were not available when she started out in this profession (or even when I donated in 2006). Paired donation (kidney exchange), notably, often holds the answer to a donation problem, and Tammy’s chapter describes some pioneering efforts.

Tammy movingly relates how she’s worked–and cried–with patients at each new disappointment. Named “Nurse of the Year” at Sharp in 2020, Tammy is as modest as she is private. “I am pretty boring but love what I do and enjoy helping people get transplanted,” she says simply.

When she’s not working, Tammy enjoys being active in Transplant Trekkers, a nonprofit San Diego group dedicated to raising awareness of living organ donation. (She proudly admits also to being a dog lover.)

Jenine Lewis, a donation advocate, seen here at Yosemite National Park with her husband, Alan.

Like Tammy, Jenine is a San Diegan who does all she can to support living donation, through Transplant Trekkers. Jenine’s book chapter, “How a Would-be Donor Became an Advocate,” relates how she set out determined to donate her kidney to her good friend. After a very long, circuitous route, she finally got the green light for donor surgery in 2016 until…

We’ll let Jenine’s chapter tell what happened and why. Though she was initially heartbroken about not being able to gift her own kidney, Jenine says she soon learned that she could provide valuable help to other potential donors. She’s been an active volunteer in raising awareness of living organ donation in the San Diego area. She often counsels others who have been similarly disappointed and shows them how they can still help their intended recipient.

A youthful grandmother of three, Jenine enjoys hiking, as you can see from the photo. Obviously, Transplant Trekkers, which interestingly raises awareness of living organ donation through virtual, customized hikes, is a perfect fit.

Fun Fact: Transplant Trekkers is the (independent) re-creation of the original WELD (Women Encouraging Living Donation) San Diego group. WELD later teamed up with Donate Life America and added chapters around the country. It now accepts men, so the acronym officially stands for We Encourage Living Donation.)

Diane Brockington, herself a living donor and a tireless champion for living donation, founded WELD in 2015. She now leads the original San Diego group, which renamed itself the Transplant Trekkers. It was Diane who introduced me to WELD and all these impressive women.

Because of Organ Donation

As a living kidney donor, I launched this website primarily to share information about living donation. Because it was my son, Paul, who got my transplanted kidney, I also often write about chronic kidney disease and transplant recipients.

And, because I fervently believe in organ, eye, and tissue donation generally, I sometimes write, too, about the importance of signing up to be an organ donor. Now I want to tell you about a book that includes all these perspectives and more: Because of Organ Donation.

Brenda Cortez has compiled and edited this anthology of 25 moving, first-person stories by donors, recipients, and donor families (that is, family members of deceased donors). Brenda is a living-donor friend/author I’ve written about before concerning her Howl the Owl (it stands for Help Others With Love) children’s books about donation and related topics. She’s helped thousands of kids understand and cope with kidney disease and transplant in their families through her books and in visits to schools and hospitals with little Howl.

Full disclosure: when I began reading Because of Organ Donation, I think I expected that I’d mainly read the donor and recipient chapters and maybe just skim the ones about deceased donation. Instead I read it cover to cover, absorbed and touched by the powerful stories.

I naturally found old friends here from the kidney community, two of whom I’d met at the Guinness Records Living Donor Rally in Chicago in 2018: Brenda herself, who shares her own story of donating to another mom she knew slightly from her daughter’s school; and Kate Griggs, co-founder of the Guinness event, who was shunned by some friends and colleagues for donating to a stranger but still turned living donation into an avocation. (If you ever spot a living donor decal on a car, it was likely a gift from Kate, who’s mailed thousands of them gratis around the world).

The other old friend I found here is Jim Myers, a kidney transplant recipient who, years ago, became a full-time–and a half!–donation advocate (he serves on major kidney organization boards, expertly uses social media, and hosts an interview show (that Betsy and I were on).

I also encountered some of my newer Facebook donor friends, like Deb Kavanaugh (also a Guinness alum!) and Trish Phillips.

I expected to be moved by all these stories, but I didn’t know I would also learn, not only about deceased donation but even living donation (I was stunned that a donor was offered the option of taking back her kidney when her recipient died).

The stories from donor families illustrate clearly how honoring a loved one’s wish to be a donor allows grieving families to take comfort in knowing that he or she was able to dramatically change someone’s life. I was particularly touched by contributors who’d known the unimaginable pain of losing a child and their joy at connecting with their child’s recipient.

Most if not all of the contributors are obviously committed to furthering organ donation and are very active in related organizations and community activities. Because of Organ Donation will surely resonate with readers who share that commitment or have ever been touched by organ donation–but also with many others who can relate to these stories of love, grief, hope, and commitment.

Brenda’s newest book Voices-19 will be out soon. 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.

Kidney Patient Summit: Voices and Faces

As part of the annual National Kidney Foundation Kidney Patient Summit yesterday, I spent most of the day in virtual meetings with congressional staffers for my congressman, Rep. David Price; both senators, Thom Tillis and Richard Burr; and North Carolina representatives Deborah Ross and David Rouzer.

I was very fortunate to be joined by a wonderful group of warm, articulate fellow advocates who helped make the day a gratifying and enjoyable experience: Ashby Andrews, exec director of NC NKF, Marcelo Pena, and Jesse Harris.

Our three main asks were to support the Living Donor Protection Act, which bars insurance discrimination and protects a donor’s job; to facilitate home dialysis for those who want to do it but need professional and logistical support; and increased funding for research, kidney disease awareness, and early detection.

Marcelo and Jesse, who both have chronic kidney disease, shared their stories, particularly their perspective on what facilitating home dialysis can mean in the quality of life of a patient with kidney failure. I shared my story as an unlikely living kidney donor (a self-professed wimp) whose adult son/recipient, Paul, was diagnosed with kidney disease in college—as a result of a strep infection. We had no family history of kidney disease, and he had no risk factors. In other words, as I often point out, what happened to my son, and to our family, can happen to any family.

As always I was so struck by the value of sharing personal stories. When you hear that some 100,000 people have been waiting years for a kidney, it’s hard to digest. Lawmakers and their staff, who were all engaged and open minded in our meetings, are no different. When they hear someone describe what it’s like, both physically and psychologically, to be tethered to a machine for life-sustaining treatments a few hours a day, a few days a week, in a dialysis center–with bright lights and bells regularly going off on machines–the staffers will remember, not the numbers, not the dollars, but the pained look on the person’s face, the catch in his voice.

These are critically important, common-sense, noncontroversial legislative asks. For more information, please go to https://www.kidney.org/advocacy/legislative-priorities

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.

Black History Month and the Present 

Happy to share this important blog post from Gail Rae-Garwood, a fellow advocate, in honor of Black History Month. Given that African Americans are so disproportionately affected by chronic kidney disease, the low representation among nephrologists is all the more unfortunate. In August, we celebrate Minority Awareness Month, and March is National Kidney Month, but kidney disease is a reality for millions of African Americans all year long.

SlowItDownCKD

I’ll bet you thought I’d forgotten all about Black History Month. Not at all, dear readers, not at all. It’s just that since this is a yearly occurrence and I’ve been blogging about kidney disease for 14 years, it becomes harder and harder to uncover Black nephrologists I haven’t written about before. Of course, including current Black nephrologists changes the picture somewhat. This year, I turned to Blackamericanweb for some help and found it, 

“Dr. Velma Scantlebury [Gail here: sometimes she is referred to as Scantlebury-White.] is the first African American female transplant surgeon in America. She is currently the associate director of the Kidney Transplant Program at Christiana Care in Delaware. [Gail here again: actually, she retired last year.] With more than 200 live donor kidney transplants under her career, she holds extensive research credit in African American kidney donation led by Northwestern Medicine Transplantation Surgeon Dinee C. Simpson, MD, Dr. Scantlebury…

View original post 774 more words

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.