My tastes in reading have always been pretty varied. I was never much of a history buff, but I discovered a back door through well-written, riveting memoirs and biographies. Similarly, though I don’t have a science background, I’ve learned so much about organ donation and transplantation through authors’ personal and professional experiences. In recent years I’ve enjoyed reading a wide range of social sciences, which have reminded me how much I enjoyed my college psych, philosophy, and sociology courses.

So I thought I’d share here some of my favorite donation-related book titles, in case you’re looking for a holiday gift for someone who has either a personal or professional interest in organ donation–or just a curious mind about a very serious and fascinating public health crisis. To me, these are classics (yes, of course, I’ve included my book) that belong on everybody’s bookshelf (listed alphabetically):

Because of Organ Donation: A Collection of Inspiring Stories Celebrating the Gift of Life–Brenda E. Cortez This poignant anthology looks at organ donation from diverse perspectives: living donors, families of deceased donors, and recipients. I wrote about it in an earlier blog post; the author has since published more donation-related anthologies (learn about her children’s books here).

The Fear Factor: How One Emotion Connects Altruists, Psychopaths, and Everyone In-Between–Abigail Marsh Marsh is a psychologist/neuroscientist with a special interest in altruism. She has done brain studies of nondirected donors and psychopaths. Her very accessible explanations, relatable anecdotes, and fine writing combine to make this a fascinating and memorable read.

The Insider’s Guide to Living Kidney Donation: Everything You Need to Know If You Give (or Get) the Greatest Gift—Carol Offen and Elizabeth Crais. Read what reviewers and readers have to say.

Kidney to Share—Martha Gershun and John D. Lantos. In alternating chapters with Dr. Lantos, a physician and a bioethicist, Gershun vividly and insightfully describes her personal experience of donating. She candidly shares both her gratification as a donor and her frustration in contending with the unimaginable obstacles on her path. Both authors raise thought-provoking points on how the system could and should work better.

When Death Becomes Life: Notes from a Transplant Surgeon–-Joshua D. Mezrich. Dr. Mezrich takes us inside the entire process of transplantation. He movingly describes talking with the families of deceased donors before ever going into the OR. He writes sensitively and evocatively of his experiences with patients and colleagues–for me, the highlight of the book. The first half, on the history of transplantation and the medical breakthroughs, is fascinating reading, though the medical details can be heavy lifting for some readers.

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

I am very pleased to share this space with a fellow living donor/donation advocate (BTW, her excellent book, Kidney to Share, belongs on your bookshelf right next to The Insider’s Guide to Living Kidney Donation).

Beyond direct donation: what if your friends and family don’t match?

September 28, 2023

By Martha Gershun, Guest Blogger

As a living kidney donor, I often hear from people who have recently been diagnosed with End Stage Renal Disease (ESRD) or have a relative who is a kidney patient. These patients have usually been given little information about the advantages of living kidney donation and almost no guidance on how to maximize their chances of finding a donor. Many providers, who are highly experienced in the medical and surgical aspects of the procedure, have limited resources to help patients implement a successful donor search. Not surprisingly, they do not tell patients that other transplant centers may have a model that offers a better chance of finding them a kidney.

Family and friends often want to help, but finding a match can be hard. Even close biological relatives, such as siblings, may not match. The odds of a potential donor matching with a non-biological relative or friend can range from 1 in 100 to 1 in 100,000, depending on the patient’s blood type and other immunological markers. Upwards of one-third of willing donors are not compatible matches for their intended recipients.

There are several ways these generous people can still donate to benefit their designated kidney patient.

Many transplant clinics manage their own databases to form kidney pairs or chains, putting together a prospective donor/recipient pair with another donor/recipient pair (or multiple pairs in the case of kidney chains) to form matches. These heroic efforts can result in several transplants over a very short period of time. However, they rely on the hospital to find these matches within their own patient population.

There are also national nonprofits that work to find matches across hospital systems for pair or chain exchanges, significantly expanding the set of possible donors. The largest of these organizations, the National Kidney Registry (NKR) lists thousands of potential donors. If a kidney patient has a willing donor who is not a match, that person can donate through the National Kidney Registry to generate a voucher, which allows the patient they intend to benefit to receive a matching kidney from someone else on the Registry. Often these vouchers are “redeemable” within weeks or months, allowing the intended kidney patient to receive a new kidney very quickly.

The National Kidney Registry also has a program called Donor Shield, which provides a multitude of benefits to the donor, including reimbursement for travel, lodging, and dependent care; reimbursement for lost wages; the possible opportunity to donate at a hospital closer to home; home blood draws; and significant support beginning with the medical and psychological evaluation for all prospective donors and extending past the surgery.

Participating in the National Kidney Registry requires the patient to be listed at one of the 102 Transplant Clinics that are paying members of the National Kidney Registry.

The Alliance for Paired Kidney Donation (APKD) does similar work, facilitating paired or chain exchanges through its network of transplant clinics in 24 states. Donors who donate as part of an APKD kidney exchange are eligible for a robust package of support and protections that include wage reimbursement; travel expense reimbursement; and donor and companion life, disability, and complication insurance. Non-directed donors also receive APKD’s KidneyPledge, which comes in several forms, including an Advanced Donor Pledge, which will provide the opportunity to participate in an APKD kidney exchange for one named individual with known kidney disease, for the life of the named individual.

The benefits to this process are so significant – for the patient, who will likely find a living donor much faster, and for their donor, who will have the benefits of NKR’s Donor Shield or APKD’s KidneyPledge, that I encourage kidney patients to seek out a transplant clinic that is affiliated with one of these nonprofits, even if they are already listed elsewhere or have to travel to do so.

Finding a living donor can be difficult, but staying creative, flexible, and persistent can make it easier.

Martha Gershun is a nonprofit consultant and writer living in Fairway, KS with her husband Don Goldman. Her most recent book, Kidney to Share (Cornell University Press, 2021), with co-author John Lantos, MD, details her experience donating a kidney at the Mayo Clinic to a woman she read about in the newspaper. Gershun serves on the Expert Advisory Panel for the Kidney Transplant Collaborative and serves on the Board of the National Kidney Foundation Serving Kansas, Oklahoma, and Western Missouri.