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.