“The Call”!

Big news: My friend and co-author, Betsy Crais, just got “the call” she’s been waiting for ever since her first (live-donor) transplanted kidney failed more than a year ago–after 15+ years. She is now the proud and very grateful recipient of a healthy kidney and a liver from a deceased donor. She is recuperating well.

Just the week before, she and her husband were en route to the beach, nearing the end of a 3-hour drive from home, when she also got the call. They excitedly turned the car around and headed back, arriving at the hospital a few hours later. She knew there was a chance she might not get those organs, because she was cautioned that she was an alternate in case the primary candidate wasn’t an acceptable match. The main candidate was fortunate that day, and Betsy went home empty handed, so to speak.

Still, it was very encouraging to get that close, after fearing that a second transplant could be years away for her. Thankfully, this time Betsy was the primary candidate and was a good match.

Recovery will take time, but Betsy always has her eyes on the prize, and she’s mainly thinking about getting stronger, leaving dialysis behind, and enjoying an infinitely better quality of life. She’s also looking forward to finally taking that beach trip or a mountain getaway this summer. In the meantime, she’s “coming along slowly but surely.”

And I sincerely hope that the grieving donor family somehow knows, as I do, that Betsy will take excellent care of their loved one’s precious organs.

This was taken at a National Kidney Foundation patient workshop we spoke at a few years ago, when Betsy’s first kidney transplant was still going strong.

Still Reaching Beyond Our Grasp…

I’m proud and excited to unveil our book’s beautiful cover. We believe it strikes just the right tone and look (given the heavy subject matter, we had to walk a fine line between too somber and too cutesy). The designers did a great job.

That the gift-wrap concept was inspired by my dear friend and former colleague Barbara Williams Ellertson is a special bonus. Barbara gave me my first job in book publishing at a small press, back in the 1980s. Before then my experience was in magazines and in feature writing, so book publishing was a whole new world. Barbara set the high standards that stayed with me.

I’ve been thinking about those days this week as I find myself, decades later, navigating digital page proofs of the book when I long for the comfort of galleys and repros. (On the other hand, I never would have been able to share the cover this way back then!)

In recent years Barbara and I have each followed our passion. You know about mine, of course: advocacy for kidney donation through this website, the upcoming book, and activism. Barbara’s passion combines her love of books with her love of art history, and she’s made a significant contribution to the field with the BASIRA (Books as Symbols in Renaissance Art) Project.

The Insider’s Guide to Kidney Donation will be out this summer and I hope will have a lasting impact, as will the BASIRA project. It’s funny where an idea, a passion, and a long reach can lead.

Vaccinated But Still Not Protected?

Like most people, I’m excited to see the relaxed CDC guidelines about fully vaccinated people being able to participate in so many vaguely familiar activities: dinners with friends indoors, movies that aren’t on our home screen, indoor Zumba classes, and on and on.

Yet for my son and many thousands of other immunosuppressed individuals, those still aren’t real options. Yes, he’s fully vaccinated, but the big unknown is whether he’s fully protected. His immune system, tamped down to coexist with his precious kidney, which used to be mine, doesn’t quite get the difference. That means it might not be protecting him the way it does most people following vaccination.

Photo by Alena Shekhovtcova on Pexels.com

According to new studies by researchers at Johns Hopkins, about half of transplant recipients developed antibodies to COVID following the requisite post-vaccination period. That’s the good news. The bad news is that half didn’t. And even those who did, usually produced far lower levels of antibodies than someone with a typical immune system.

Researchers are looking into the other ways the body can protect itself (B cells and T cells, for example), additional options like a third shot, and much more that I don’t understand. But in the meantime, the bottom line is that unless a given transplant recipient is confirmed to have an adequate level of antibodies, they should behave as if they’re unvaccinated–that is, they may still be vulnerable. After the long months of waiting his turn to get the vaccine, and then counting down to the full-protection stage, the news was heartbreaking.

I guess it shouldn’t have come as a surprise to me, but I honestly don’t recall ever hearing or reading any cautionary statements on that point. The focus, understandably, was on safety: it’s safe for transplant recipients to get the vaccine because it’s not a live vaccine, and the known risks of kidney patients’ developing a severe case of COVID are far worse than any risks of the vaccine. I echoed that advice here too.

For now, the best protection against COVID for my son and other transplant recipients–or anyone with a weakened immune system–is for the rest of us to be fully vaccinated. If you are not vaccinated, please honor the honor system and continue to wear your mask and to social distance. At-risk people like my son need to continue to take the old precautions. So the next time you see someone wearing a mask in public, don’t just assume that they’re not vaccinated. That person may well be fully vaccinated–but still not fully protected.

So How Unlikely Is It for a Donor to Later Need a Transplant?

In a word: very. Yes, it’s crucial to consider the what ifs when contemplating something as important as living donation. And yes, later needing a transplant is more likely for a donor than it is for a healthy person who has never donated. But here’s the bottom line: there’s about a 1% chance on average of a living donor later needing a kidney transplant.

Apparently, that surprises people, particularly living donors. My post on the subject received the highest number of views of any of my posts. Needless to say, the news made a lot of people, including me (now nearly 15 years post donation), very happy and eager to share the good news.