Why Is Living Donation So Important?

According to polls, the vast majority (90%) of Americans favor organ donation after death–yet, only about 60% are registered to be organ or tissue donors.

Just curious, what percentage of people in the United States would you guess die in such a way that traditional organ donation is possible? A third? A fifth? Not even close! Less than 1 percent: typically, in a hospital following an accident. So, no, not at home in their beds, not on impact in a car crash, often not even after a slow death from myriad diseases.

That little heart on your driver’s license is just one way to make it known that you want to be a donor. It takes just a minute to register online at many sites.

Traditional organ donation 101: When a dying person has been determined to be brain dead—no activity, no chance of survival—but the heart is still beating, blood is flowing to their internal organs. Once the organ has been removed from the blood supply, the sooner it’s placed in the recipient’s body, the better. With luck it’s off the blood supply for only a few minutes or hours. When it’s necessary to put it on an airplane, that interruption may last several hours—technically, 24 to 36 hours is acceptable, but the sooner it can be hooked up to the recipient’s veins, the better.

So most of the 100,000 people on the national waiting lists may languish several years–5 to 10 is not uncommon–before they receive a lifesaving organ (most of them are waiting for a kidney), and thousands don’t get one in time. Clearly, we need more people to be registered donors.

So, absolutely, register to be an organ and tissue donor (organdonor.gov is one of many sites where you can register in just a couple of minutes), and tell your family of your desire (and then urge them to do the same). But even if everyone complied, we’d still have an organ shortage because of that 99% that can’t be used in traditional donation.

That’s where live donation comes in. Not only does it add to the pool and shorten the wait, it even improves the outcome for most transplant recipients. And we need to remove obstacles for potential donors so that more people will consider being living donors. Tell your representatives–in your state and nationally–to support the Living Donor Protection Act and to increase funds for financial assistance for living donors and for early detection of chronic kidney disease.

An important health crisis as urgent and daunting as an organ shortage deserves more attention, more funding, and a meaningful commitment to finding creative solutions.

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.

Still Advocating After All These Years

Last week I had a day of back-to-back virtual meetings with congressional staffers–plus one congressman!–to talk about the Living Donor Protection Act and kidney health in general. Hard for me to believe that this was my fifth such event. Unlike most of the others I’ve been a part of, this one represented a partnership of 22 kidney-health organizations–including the National Kidney Foundation, of course–led by the American Society of Nephrology.

The good news: The LDPA is closer to being passed than at any time since it was first introduced in 2014.

The bad news: With Congress adjourning soon, if it doesn’t make it across the finish line now, we’ll have to start all over in the next session of Congress. (That thought is not only depressing but overwhelming because of logistical issues that I’ll save for another post.) Consequently, our “ask” was not just for cosponsorship of the bill by those members who hadn’t yet signed on but for help from all of them to get the bill to the floor.

As I related here after one such day of meetings, I’ve come to understand what the trainers have told us repeatedly: it’s the personal stories that will stay with and move a staffer or member of Congress. They’ve had a gazillion meetings and heard all the appalling numbers before: that nearly 100,000 Americans are waiting for a kidney and at least 13 die every day because they didn’t get one in time. They know all that on an intellectual level. It’s not the same as hearing what it means for a mother to see her son grow more and more listless and depressed as he struggles through long months of dialysis.

I was joined by an impressive group of fellow advocates who represented an interesting range of perspectives: Brenda Johnson, from the Veterans Transplantation Association, who told of veterans struggling with kidney failure or having to fight with insurance companies to get life insurance if they donate; Lauren Drew, NKF’s very savvy governmental affairs director, who’s been my mentor for such meetings since I first became a Kidney Advocacy Committee member; Dr. Hostensia Beng, a pediatric nephrologist, who shared heartbreaking stories of parents trying desperately to find a kidney donor for their young child; and Dr. Gentzon Hall, a nephrologist/genetics researcher at Duke Medical Center (just down the road from me), whom I’d met last year when we were on the same advocacy team. He emphasized the dire need for more research funding.

The highlight of the day had to be our meeting with Rep. Gregory Murphy, a former transplant surgeon. He knows firsthand how transplant transforms lives, and he promised not only to cosponsor the Living Donor Protection Act but to do all he could to help move it across the finish line before Congress adjourns.

It’s soo close. C’mon, LDPA!

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: 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.

Donors Don’t Get Paid, But the Rewards Are Still Real

Every once in a while, I mindlessly scroll through my website stats to see how a particular blog post or month of posts fared. I was curious when I noticed “Best Views Ever” (in more than three years): November 28, 2020. Hmm, what might that have been, I wondered. Naturally, I had to check it out.

I was delighted–and honestly, not too surprised–to see the title: “Kidney Donors Don’t Get Paid, But the Rewards Are Very Real.” I remember that a lot of living donors told me they’d read it while nodding in agreement, and many people pointed out that even though these things were pretty obvious to donors, transplant centers usually don’t give them enough weight. I just reread the post to see how it holds up nearly two years later. I can defend every word, so I’ve decided to reprint it here (rather than link to it) so it will have today’s date–and not be limited to kidney donors:

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In previous posts, I’ve described some of the enormous benefits of a live vs. deceased-donor kidney transplant for the recipient, but did you know that there are many very real benefits to the living donor, too? For family members or couples, the benefits are nothing short of dramatic. And I’m not just talking about feel-good points.

Photo by Pixabay on Pexels.com

For a family, the practical benefits can be as concrete as money in the bank. A spouse or parent whose ability to work was limited by dialysis for a long period may gradually be able to resume a full-time schedule–maybe even launch a new career. That can substantially improve the family’s ailing financial health as well.

For family caregivers, particularly, donating a kidney to the loved one you’ve been caring for can bring huge relief. The reduced stress and no doubt improved sleep can have considerable benefits in energy, mood, overall outlook, and, as a result, even job satisfaction.

Then there’s the extraordinary motivation of saving a loved one’s life or turning it around. A living donor I know who’d donated to her husband described her decision as “purely selfish. I wasn’t about to lose him,” she insisted. I know the feeling.

Seeing someone you love–in my case, my adult son–who’d been pale, weak, and listless for months or years gradually become their old self again is pretty powerful. And a donor whose partner wasn’t interested in intimacy during a long period of ill health may see a positive change in their relationship.

Want to improve your social life? Give your partner a kidney! Couples who have been uncomfortable for a long time about socializing—whether because of physical obstacles or simply due to the dialysis patient’s lack of energy or interest—may soon be able to enjoy evenings out with friends or family.

For anyone who donates a kidney—even to someone they don’t know—the benefits are nearly universal:

The feeling of personal gratification is indescribable. Knowing that you’ve helped give someone—anyone—a shot at a healthy, productive life—is an extraordinary feeling. Living donors in studies report a boost in self-esteem, and 9 out of 10 say they would do it again. Through donor-support groups I’m active in on Facebook, I’ve been struck by how life changing the experience has felt for most of us, including the few who have later had complications or whose recipient didn’t fare well for as long as expected.

A fascinating journal article inspired this post. The researchers argue that for the above reasons and more, transplant centers considering a potential donor’s relative risk might do well to acknowledge and give weight to the undeniable tangible benefits for certain donors.

“Van Pilsum Rasmussen, S. E., M. Henderson, J. Kahn, and D. Segev. “Considering Tangible Benefit for Interdependent Donors: Extending a Risk–Benefit Framework in Donor Selection.” American Journal of Transplantation 17, no. 10 (Oct. 2017): 2567-2571.

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.

How’s Your State Doing on Donor Protection Measures?

In my last post I promised information about living donation-related protections and benefits, by state. As I mentioned, while awaiting passage of a federal Living Donor Protection Act, more than half of states now have their own version (28 at last count). In fact, like the one we’re supporting in North Carolina, some actually are more generous than the federal version (by including paid leave for state employees who donate).

United States Map With State Names Pdf Valid Printable Map Of | Printable Map Of The United States Pdf – Printable US Maps

But the LDPA is just one way that states can encourage living donation. Financial supports and job protections are other critical ones. Are you considering being a living donor, or have you donated recently? Do you know what the relevant tax provisions and protections are in your state–or in a state you may be looking at? It’s worth doing your homework.

The National Kidney Foundation has a terrific resource in a map you can click on to find out what donation-related laws and protections a particular state offers. Does it have a Living Donor Protection Act, or similar insurance-discrimination protections? Does it also have job-protected living donor leave for private employees? How about for state employees? What about paid leave? What about tax deductions? Even better, what about tax credits?

The American Kidney Fund website also features an invaluable resource: a state report card. It rates each state based on important donation-related measures and provides an overall rating on how well that state encourages living donation and removes barriers. Not surprisingly, only a few states merit an A: Arkansas, Connecticut, and Louisiana. Glad to see that more than a dozen at least get Bs, but nearly as many have Cs, a few get Ds (including, alas, North Carolina).

Unfortunately, nine states rate an F–that is, these states failed miserably because they have no donation-related measures in place: Alabama, Michigan, Montana, Nevada, New Hampshire, South Dakota, Tennessee, Vermont, and Wyoming.

The tragedy is that none of these donation measures is really controversial–they shouldn’t be so damn hard to pull off. They are simple, reasonable, common sense ways that a state can demonstrate its support for people who help save a life in this way. In fact, not only does encouraging living donation save lives, for kidney patients it reduces costs by reducing the number of people on dialysis (Medicare pays about $90,000 a year per dialysis patient).

With 106,000 people in this country on the national transplant waiting list (most of them needing a kidney), it seems that the very least we can do is remove the barriers to living donation.

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.

NC’s Living Donor Protection Act Back to Square 1

Everyone seemed to think the bill was oh-so-close to passing this session. And, personally, I was honored–and very excited–to be one of three local advocates invited to the National Kidney Foundation’s planned legislative breakfast with a few supportive state representatives. NKF wanted us to share our personal views of why the state needs to protect living donors. The breakfast had already been scheduled and rescheduled months in advance.

This state bill had been in the works for a few years (admittedly not nearly as long as the federal version, which dates back to 2014). In an effort to remove disincentives to donation, the legislation was designed to ensure that donors could not be refused or overcharged for insurance, among other protections. Tired of waiting for a federal Living Donor Protection Act, more and more states (now 28) have passed their own LDPAs.

The NC bill had strong sponsors in the House and Senate, and we were looking for more cosponsors. But after several delays, last month we got word that the bill would not be taken up during this short legislative session. Better luck next year.

Just before the pandemic, in January 2020 I went to our state capital as part of another small NKF delegation to tell my story to legislators as we searched for sponsors. Since then the bill has gradually made its way through the Health and Finance committees, and, finally, Insurance. When I was asked to submit testimony to the Finance Committee, I related my experience as a living donor, describing what a “best-case scenario” looks like.

We thought for sure this time the bill would succeed. Alas, by not being considered during this session, the bill will go back to square one when it’s reintroduced next year. Again, we’ll be looking for more cosponsors.

Photo by Edwin Jaulani on Pexels.com

Whatever else you can say about sausage making–it sure is slow. In an upcoming post, I’ll provide current information on state laws and benefits for living donors.

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: 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.