Advocacy Ripples in the Medical Community

I became a living kidney donor simply out of necessity, because my son needed a kidney. I became an informal donation advocate basically because the experience was so much easier than I feared, and so gratifying that it had an extraordinary impact on me, so I wanted others to know about it. At first I advocated by writing op-eds and online articles… then through my book with Betsy Crais, The Insider’s Guide to Living Kidney Donation, which is now in production.

While our book was in the works, next came this website and blog, and I started to see the ripples spread out. Then I became a National Kidney Foundation kidney advocate and started meeting with lawmakers. I was excited to see that impact widen as I lobbied for legislation to protect and support living donors and to help people like my son and Betsy, with chronic kidney disease.

Now I’m thrilled to report that with the recent publication of a widely heralded textbook for transplant professionals, Living Kidney Donation, those ripples are spilling into the medical community. As lead author of a Patients’ Foreword, I was honored to help craft a message to those professionals who work with kidney patients, donors, and their families every day.

A “Patients’ Foreword” for a medical textbook is certainly a novel idea, and it’s totally consistent with co-editor Krista Lentine’s advocacy for kidney transplant patients and living donors. Dr. Lentine was recently honored with a major award from NKF, the 2021 Excellence in Kidney Transplantation Award.

I’m humbled to share a citation with her and grateful to know that the patient’s perspective will have a wider, meaningful voice in the medical community.

Talking about Books

I have so much to report this week as our book The Insider’s Guide to Living Kidney Donation makes its way to publication. Our copy editor is finishing up the detail work, and several people we admire in the donation and kidney community are reading the manuscript in preparation for writing back-cover blurbs! I’ll keep you posted on its progress as it goes into production in the coming weeks (we’re aiming for a spring publication).

Photo by Stas Knop on Pexels.com

And this week my co-author, Betsy, and I recorded an interview for “This Podcast Will Kill You,” a very popular and creative science podcast. The engaging young scientists who are the hosts (both named Erin, by the way), know how to translate fascinating, but complex, information on diseases into accessible material for a wide audience. Their enthusiasm is infectious, too.

For an episode on organ transplantation, which will air February 9, Betsy and I described our experiences as a living donor and a kidney recipient. In the process, we hoped to shatter some myths about this similarly fascinating but complex subject. Naturally, we were also happy to talk about our upcoming book. Chatting comfortably with Erin Welsh was great fun.

Meanwhile, on other book fronts, I’m involved in a textbook for medical professionals, Living Kidney Donation: Best Practices in Evaluation, Care and Follow-up. Yes, you read that right: a medical textbook. No, I’m obviously not a medical professional, but the lead author, Krista Lentine, asked me to collaborate on a Patients’ Foreword for it (I’m proud to be its lead author). In the foreword we share the often overlooked perspectives of donors, recipients, and their families on events that of course affect the entire family. The textbook will be out in March.

Stay tuned for updates as each “event” goes live.