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.

Living Donor Champion Program #1

I spoke to my first group of prospective kidney recipients and their “champions” last weekend at the University of North Carolina’s transplant center in Chapel Hill. I was delighted to see how many people had brought along their spouse, siblings, and/or children to learn how to tell their story and spread the word about the person’s urgent need for a kidney.

This is a terrific program, and I only wish it had existed when we were contemplating my son’s transplant. Asking someone–even a relative–to part with a bodily organ does not come naturally to most people. So the idea of teaching one’s support team about how kidneys work (or fail) and live donation, and how to spread the word, is an inspired and effective approach.

You may have seen newspaper photos of people publicizing a need for a kidney (for themselves or a loved one) on a billboard or banner or tee shirt, complete with blood type and telephone number. But for every one of these novel attention grabbers, tens of thousands wait silently for someone to come forward.

My son was one of the lucky ones (he got a kidney from me). So was Betsy, my co-author (The Greatest Gift: The Insider’s Guide to Living Kidney Donation). She got hers from a colleague at UNC, where she teaches. We shared our stories with the attendees and answered questions. (That’s me on the right.)

I told about donating to my son 12 and a half years ago. I hope my story resonated with these “champions,” because they’re also potential living donors, of course. I told them a secret: living donors aren’t necessarily brave. I certainly wasn’t. In fact, as I told them, I’m a wimp. It’s not just that I don’t like needles–who does?–I don’t like thinking about or picturing medical procedures. My sister once made the mistake of asking me to come along for moral support when she had oral surgery. I waited in the hallway so I wouldn’t risk glimpsing anything, but I could still hear what was going on. When my sister asked the surgeon to explain what he was about to do, I started feeling faint as I listened. The nurse had to run out of the room to pick me up off the floor. My sister was not amused.

Betsy told about her transplant, which happened 15 years ago. The prospective recipients could certainly relate to her decades-long experience with chronic kidney disease, which runs in her family. Like her mother and two of her siblings, Betsy has polycystic kidney disease, PKD.

The attendees had come from all over the state for this 2-hour program. One couple told me they’d had a 5-hour drive. One gentleman who’d brought his sister and brother with him said that they both were being tested as donors. A sibling offers a great match. He was concerned that his sister had been told to lose a lot of weight before she could be approved to donate. I told him that transplant centers typically will work with such prospective donors and usually have them meet with a nutritionist.

Many of the attendees had lots of questions and left with answers, I hope, but no doubt with more questions. Maybe some of them found their way to this site and are starting to get those answers. In any case, I wish them all well.

Betsy and I look forward to participating in another program in June.