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.

Talking to Potential Living Donor Champions

What are living donor champions? They are friends and family members of someone who needs a transplant who learn how to effectively spread the word to potential donors. Let’s say you know someone who needs a kidney, but they’re uncomfortable for any number of reasons about coming out and asking someone they know–much less someone they don’t know–to donate one of their kidneys.

Back in 2004 when we first learned that my son would need a transplant, the idea of asking someone if they would donate their kidney was beyond awkward. (People who have trouble asking for a ride to the airport don’t even know where to begin to ask for a bodily organ!) Though social media existed then, it was mostly a social thing for teens and 20-somethings–hardly a vehicle for something like life-saving/life-changing requests. Fast forward to 2019: Facebook, Twitter, and other platforms have changed the whole donation landscape, which dovetails perfectly with living donor champion efforts.

Betsy Crais, my co-author (The Greatest Gift: The Insider’s Guide to Living Kidney Donation), and I are going to speak at a few such programs over the coming months. We’ll start with one this weekend at the University of North Carolina’s kidney transplant center. That’s only fitting, because it’s where I donated a kidney to my son, and where Betsy received hers from a UNC colleague. We’re going to tell our stories and take questions from attendees.

I’m so looking forward to it. Watch for a post on the event!