15 Years Is Not Long Enough!

I really hoped I would never need to write this post.

If you’ve checked out my story or many of my blog posts, you know that Betsy Crais, the co-author of my book in progress* and a dear friend, is a kidney recipient from a live donor. Betsy had her transplant 15 years ago and had been doing really well until the last several months.

Elizabeth (“Betsy”) Crais

I am so sad to say that Betsy’s kidney function has declined to the point that she now needs another transplant. I’ve always said that Betsy was the poster child for living a full and productive life with a kidney transplant: not only does she work full time as a university professor and researcher, shunning retirement, but she’s active on grant review panels, committees, and national organizations–on top of being a devoted wife and mother and a lovely person (not to mention a co-author and a donation advocate, of course).

Because Betsy, like her mother and two of her sisters, has polycystic kidney disease (PKD), her two adult children are at risk of developing it themselves. They can’t be considered as donors until they’re well into their thirties, when the disease typically manifests itself. Betsy had fervently hoped to avoid dialysis, but in the absence of a living donor for now, she is having an access port put in soon and expects to start dialysis this summer.

If you know anyone who has ever remotely considered donating their kidney (or maybe the idea of doing it yourself is what brought you to this site), please contact me (carol.kidneydonorhelp@gmail.com). I’ll provide the contact info for the donor nurse coordinator at UNC Hospitals. Betsy is blood type A, but as you may already know, these days it’s not essential to have a matching blood type (see the FAQs). There are lots of options now.

Thanks for anything you can do to help spread the word!

*The Greatest Gift: The Insider’s Guide to Living Kidney Donation.

The Big Ask, The Big Give

After a terrific workshop for kidney patients and their families and friends on Sunday, I was initially inspired and encouraged at all the valuable resources and options available for finding a donor: paired donation (aka “kidney swaps”), social media vehicles for spreading the word, financial assistance for travel and lodging, and sophisticated fundraising plans. These exciting options were unthinkable back when we learned that my son Paul’s kidneys were failing. Yes, I was ultimately able to donate to him in 2006, and so glad I did, but we had no back-up plan if I hadn’t been able to donate. I was relieved to know that someday when Paul needs another transplant, that these options now exist.

Betsy, my co-author,* and I had been invited to be on a panel to tell our story and take questions at the National Kidney Foundation’s Big Ask, Big Give program at the University of North Carolina’s Rex Hospital in Raleigh, NC. It’s understandably hard for most people to go public about such a personal need (brother, can you spare a kidney?), and it’s easier for loved ones to spread the word. The program provided useful resources and concrete advice, with step-by-step plans on telling “your story” or your loved one’s. The cautiously hopeful attendees sounded resourceful and impassioned.

But when I couldn’t fall asleep that night, something was nagging at me, and my excitement turned to righteous indignation. Damnit, people facing kidney failure and their families shouldn’t need to think about fundraising or how to word the biggest ask of their lives. They have enough things on their plate. Soon my righteous indignation turned into outright anger when I recalled at least two attendees’ mentioning that their family member on dialysis had lost their job because of needing to miss so much work. What kind of a system allows these shameful situations to happen?

My inclination was to condemn the companies that had pulled the rug out from under these vulnerable employees, but then I realized that it’s not that simple, of course. Big companies can better afford to be supportive and accommodating in the face of frequent or long absences and the need to hold a job open. What about smaller companies or mom-and-pop establishments that are themselves just getting by? That’s why it’s the system that needs fixing. Sure, not all big companies go the extra mile anyway, so absolutely, let’s give a shout-out to those that do: in my case, RTI International. I benefited from a shared-leave program through which generous, anonymous colleagues donated leave time when I’d exhausted mine.

Humane and compassionate employment support at such a time ought to be a right, not a perk.

Living donors are now protected under the Family and Medical Leave Act (FMLA), but the FMLA applies only to government employers and to private employers with at least 50 employees. (And remember, that’s unpaid leave!) Incidentally, even the Americans with Disabilities Act (ADA), which mandates reasonable accommodations for people with disabilities, applies only to companies with at least 15 employees. I’m not an economist, but it seems like a no-brainer that we need to be providing subsidies or tax breaks to enable small firms to provide paid leave and job protections for donors and recipients.

For example, if federal laws (it shouldn’t matter what state you live in) ensured that no one could lose income (much less their job) to be a living donor, more lives could be saved. Sure, money isn’t the only consideration in someone’s decision to donate, but it’s very often a deal breaker to anyone without sick leave.

The recipient’s health plan covers the donor’s medical expenses, but few insurers, like United Healthcare, include any necessary travel and lodging costs for donors who need to travel far to the recipient’s transplant center. Our tax system should allow credits, not deductions, for kidney patients’ own medical expenses and for reimbursing their donors’ nonmedical expenses.

 In a recent post, I described the National Living Donor Assistance Center’s (NLDAC)’s proposal to expand its coverage to include lost wages and related childcare or eldercare expenses. NLDAC currently covers travel and lodging expenses, which is great, but lost wages and additional out-of-pocket expenses affect far more potential living donors than the need to travel. Some living donors spend thousands of dollars to offset their uncovered costs; at the same time, each one saves the healthcare system an estimated $145,000.

No one’s suggesting paying donors for parting with their kidneys–only that it shouldn’t cost anyone money to do so. Expanding donor assistance would go a long way toward making living donation financially neutral. It’s not only the cost-effective thing to do, it’s the right thing to do.

*on our book in progress: “The Greatest Gift: The Insider’s Guide to Living Kidney Donation.”

The Greatest Gift: What’s Inside?

In my last post, I shared how the idea for our book came about and promised some information on what’s inside and why.

Photo by Pixabay on Pexels.com

Our ultimate goal in writing The Greatest Gift: The Insider’s Guide to Living Kidney Donation, of course, is to highlight the desperate need for living donors and to encourage people who might not have considered donating to think about whether they could be a donor. 

Overwhelming statistics—like 100,000 people on years-long wait lists for a kidney and fewer than 20,000 transplants performed each year—become more understandable and meaningful when they are presented in terms of individuals’ firsthand experiences. Besides sharing our own stories and lessons learned, we decided to include other perspectives, with first-person accounts of people personally or professionally involved in the donation or transplant process: donors and recipients, of course, but also family members, a caregiver, a family therapist, a volunteer advocate, a transplant nurse coordinator.

From the beginning, we were on the same page in wanting to provide thorough but accessible, nontechnical and multifaceted information for both donors and recipients. We were mindful that families, friends, and acquaintances of kidney patients are the best source of potential living donors and are certainly the backbone of the patients’ support system.  In assisting donors, we reasoned, we would clearly be helping patients, too. We also wanted to reach both readers who already planned to donate or to be a recipient as well as those just exploring the idea. We initially drew mostly on our own experiences in raising issues to be considered at all stages of a donation or transplant. In recent years, as we became immersed in the burgeoning kidney-support and living-donor communities, we were able to learn what “real-world” questions others were raising in workshops, Facebook groups, and online forums.

Within these parameters, we each had our own personal motivation and goals for the book. Betsy was particularly interested in addressing emotional and family issues, how a transplant might affect you personally and the impact it can have on your loved ones; as a self-described wimp who feared the donor’s medical evaluation phase as much as the surgery itself, I wanted to provide details on tests and interviews to support and motivate others who might be similarly hesitant.

Although our experiences overlap, the reality is that potential living donors and transplant recipients have inherently different journeys. Living donation, by definition by a healthy individual, is of course a choice; transplant, on the other hand, though technically a choice, is usually a critically needed and wished-for prospect for someone with end stage renal disease. Dialysis helps patients maintain some of their kidney function while awaiting transplant, but it cannot offer the same quality of life and long-term outcomes as a new kidney. The decision to seek a transplant and the steps in the process are determined by a patient’s individual medical needs and circumstances. The medical issues naturally dominate, so frequently family and emotional considerations are given short shrift.

That’s why we have a detailed chapter on thinking through the decision to donate and the step-by-step process: what to expect and ask along the way. For recipients, we focus on the often-overlooked nonmedical aspects of having a transplant and on the emotional consequences of neglecting these important issues.

 Because we fully recognize the enormity of a decision to donate or have a transplant, we encourage everyone to consider the myriad factors that go into such a decision. We hope that having all the information contained in our book will empower readers to be informed consumers because information is power—never more so than in matters of health.

How “The Greatest Gift: The Insider’s Guide” Idea Originated

As you may know, some of the information for this site comes from the book The Greatest Gift: The Insider’s Guide to Living Kidney Donation, which I am writing with Betsy Crais, a live-donor kidney recipient. As we come into the final lap of the book’s marathon preparation, I thought it was time to share its origins with you.

Betsy and I met nearly two decades ago when our daughters were in the same Girl Scout troop (we bonded when we shared a pup tent during a camping trip). Some years later we discovered that we also shared a passion for encouraging living organ donation, which has resulted in this book.

the 2 authors, women, sitting in front of a sign that says "Ask the Expert"
Elizabeth (“Betsy”) Crais, left, and me at the University of North Carolina’s Live Donor Champion program, Chapel Hill, NC, on March 24, 2019.

How did we go from tent-mates to co-authors? I’m glad you asked. Read on.

When Betsy first faced declining kidney function and had to consider dialysis and ultimately a transplant about 15 years ago, the only books she found to inform her were renal-focused cookbooks or medical texts about kidney diseases, with short chapters about her condition (polycystic kidney disease, or PKD). There was little available on what to expect before and after dialysis or transplant, and certainly nothing that delved into topics related to emotions or family relationships.

Fortunately for Betsy, she at least could talk about her disease with her mother and two of her siblings, who also had PKD. Through them, she could at least get some of her personal questions answered. Later her sisters also came to help her when she had her surgeries. Although her siblings’ care was a great blessing, the best part was having someone there who had been through the experience and could guide her expectations. 

In contrast, when I faced the opposite situation a couple of years later—contemplating being a living donor for my 25-year-old son, Paul—I knew no one who had donated a kidney. I had dozens of questions and could ask the professionals some of them but had no one to advise me who’d been through the experience. For Paul’s questions, fortunately our family could call on Betsy, who talked to Paul to help allay his and the rest of the family’s concerns. Most important, Betsy shared some encouraging examples of how her quality of life had improved post transplant compared with her time on dialysis.

Not long after Betsy’s transplant and recovery, she began thinking about her difficult experiences and the silver lining of having family members with PKD who could be her own invaluable support group. The awareness that most people, like me, do not have that critical support prompted us both to want to write a book that could help others be more informed about what to expect in the donation and transplantation processes. Both of us had been surprised and frustrated to find so little practical, nontechnical information and support in those pre-Google days.

Early on Betsy drafted an outline and started thinking of people who might contribute various chapters, and Carol wrote an occasional op-ed piece on being a living donor. But because of day-to-day obligations it would be several more years before Carol reached out to Betsy to talk concretely about an idea for this book. 

Neither of us knew that the other had already been thinking along the same lines.

Next time I’ll provide some specifics about The Greatest Gift: The Insider’s Guide to Living Kidney Donation and share with you our goals for the book.

Expanding Aid to Living Donors: Dear Committee Members

May 20 was a big day. The committee that advises the federal agency with the power to expand financial aid to living donors held a meeting and heard a dramatic plan from the National Living Donor Assistance Center (NLDAC). The plan would not only markedly expand eligibility but would extend coverage for significant living donor costs like lost wages and childcare and eldercare expenses. Those essential expenses so often stand in the way of would-be donors’ acting on their desire to donate (and save a life).

Photo by rawpixel.com on Pexels.com

The Advisory Committee on Transplantation accepted public comments in advance of the meeting and dedicated some meeting time to hearing from people supporting expanded benefits for live donation. I prepared my comments and sent them to the committee last week. During the online meeting, I listened excitedly to the impressive NLDAC presentation and patiently waited to speak. Alas, because of technical difficulties and the committee’s being behind schedule, most of us never got to deliver our remarks live. This is what I was going to say:

Dear Committee Members:

I’m a living donor in North Carolina. Thirteen years ago I donated my kidney to my 26-year-old son. We were fortunate to live close to one another and near the UNC transplant center. I had a smooth recovery and could have gone back to work in 2 or 3 weeks if it were just a matter of my own health. But like so many other living donors, my recipient was a family member, so I was also a caregiver; we were all devastated when our son needed emergency surgery a week after his transplant. His recovery was slow, and he lived with us for about 2 months. I missed work for much of that time.

My husband and I shared family responsibilities that included our other child–a teenager with her own needs–and my elderly father, whom we had moved down to our town. We both maxed out our paid leave time. With my job, again I was fortunate: I had a supportive supervisor, short-term disability leave, and an employer with a shared-leave policy that enabled colleagues to donate their leave time. I cobbled together partial coverage. My husband did not have the benefit of shared leave donations. Not many potential living donors have such luxuries. In fact, many of the people on the transplant lists have low incomes, and many of their families and friends have little ability to ride out periods of missed pay. So they languish on the wait lists still longer.

NLDAC’s coverage of travel and lodging expenses for donors has saved lives by enabling people to donate who would not have been able to otherwise. The prospect of lost pay affects—that is, discourages—even more potential donors than travel issues do. My son was so lucky to have a live donor. If I hadn’t been able to donate to him after he’d spent nearly 2 years on dialysis, he could have faced another 5 years tethered to a machine 3 times a week, draining his energy, his time, and his spirit. Incidentally, the 5-year survival rate on dialysis is only a little more than a third.

 At an extremely difficult time for our family, we at least had everything going for us: our location, adequate resources, and a supportive employer. I implore you to help someone else’s son avoid that long, dangerous wait for a donor by raising the income cap and extending benefits to cover lost wages and related costs. Thank you.

I’ll have more details on the NLDAC recommendations when we learn how HRSA (Health Resources and Services Administration, part of Health and Human Services) decides to proceed.

WELD-What Do Living Donors & Transplant Folks Talk About?

When living donors (women) and transplant professionals (men and women) get together, what do they talk about? Well, if a recent meeting of a local WELD (Women Encouraging Living Donation) chapter at my house is any indication, assorted animated discussions could cover the following:

Transplant surgeons Dr. Aparna Rege, bottom left, and Dr. Bradley Collins of Duke Transplant Center, Durham, NC, with a few local WELD members.
  • Spreading the word of the urgent need for living donors to reduce the 5+ year wait for a kidney for those on the transplant wait lists
  • Transplanting pigs’ kidneys to humans: logistics and ethics
  • Using drones to transport a deceased-donor kidney
  • A live kidney being put with the plane’s cargo but a heart going in the cockpit with the pilot
  • Hamilton, the musical
  • Managing kidney donors’ pain effectively with a combination of meds to reduce or even eliminate use of opioids
  • Taking part in The Big Ask, the National Kidney Foundation’s program to help kidney patients’ family and friends help the patients find a living donor
  • Some African Americans being wary of organ donation, specifically, but sometimes the health care system, generally
  • A transplant center’s setting up a paired donation program, which enables donors and recipients who are not a good match to swap with another pair so as to find a successful match for each pair
  • Solo camping with your dog
  • Comparing current and brand-new rules on allocation of livers from deceased donors
  • New approaches to preventing post-donation constipation in donors
  • Signing up as an organ donor whether or not you choose to have a little heart on your driver’s license
  • A grieving family arguing about whether to honor a young person’s wishes to be an organ donor
  • A young donor concerned about pregnancy, wanting to participate in a study to help provide the answers that elude her now
  • Comparing two surgeons’ hand sizes
  • Camping with the Girl Scouts

It was getting late for a weekday evening, and everyone else had a drive home, but I’ve no doubt we could have found lots more to talk about.