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).

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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.

Living Donors: What Do You Think About COVID Vaccines?

Last week I wrote about issues surrounding kidney recipients’ getting a COVID-19 vaccine. In it I offhandedly mentioned that risks and priority currently aren’t considered particular issues for living donors. So I’ve been trying to get an appointment for a COVID vaccination ever since the eligibility in my state opened up to include people over 65. Putting aside the frustration of not enough vaccines, limited appointment times, the disorganization, and so on, personally, I’m all for it.

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But I know that some people aren’t so sure.

I was glad to learn that studies of living donors’ attitudes have already started. Drexel University College of Medicine, for one, wants to know what we think–and what that’s based on–about donors and recipients getting the vaccine. Whether you’ve already donated or you’re still in the evaluation process, please take this anonymous survey on living donors’ and potential donors’ multifaceted perspectives.

Should Kidney Recipients Take the COVID Vaccine–and When?

This week I attended a National Kidney Foundation webinar that answered questions about kidney patients and the COVID vaccine. As the mother of a kidney transplant recipient (my recipient, actually), I naturally have a particular interest in the topic. As a living donor, though, it doesn’t appear that I have any reason to need or receive priority for a vaccine. Yes, I have just one kidney, but it’s doing a great job and I’m otherwise healthy. Most living donors can say the same.

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As far as transplant recipients, though, the need is clear. They are at greater risk of developing serious complications if they get COVID. Unfortunately, the vaccine trials did not include transplant recipients or people who are immunosuppressed.

That makes it reasonable to ask how the scientists know that the vaccines are safe for chronic kidney patients. Given that it’s not a live vaccine and that the research builds on similar research that goes back a lot farther than the less-than-a-year in which the COVID vaccines have been developed, are valid reasons for optimism.

Still, some say, yeah, but they don’t know for sure. To answer that, most health authorities point to the unknown additional risks of the vaccines vs. well-known risks of COVID. Put another way, they believe that the known benefits of the vaccines far outweigh the known risks of developing severe complications from COVID. On balance, I’d say the argument for taking the vaccine wins hands down.

In fact, in view of chronic kidney patients’ risk of severe illness from COVID, NKF issued a statement last month calling on federal policymakers to bump up priority for them in vaccine distribution plans. Because infected household members and caregivers would pose a significant risk to these people, the statement urges inclusion of their caregivers and kidney care providers as well.

Kidney patients who receive the vaccines are being asked to provide feedback on their own reactions/experience to offset the lack of specific study-level information. As thousands of people receive the vaccine every day, more and more data will be available for study. Johns Hopkins University is currently doing a research study on the vaccine for transplant recipients.

The bottom line, of course, is that every transplant recipient, every dialysis patient—hell, every patient—is different. Discuss your own health risks with your transplant team, kidney specialist, or primary care provider.

Personally, I’m ready and eager to take the vaccine as soon as they get up to my group (65 plus) in my area. Whether you’re a kidney patient or a living donor, or potentially one or the other, I hope you are, too.

*****

Co-author, The Insider’s Guide to Living Kidney Donation: Everything You need to Know If You Give (or Get) the Greatest Gift, to be published in 2021.