The Ultimate Medical Drama

A Sensible Medicine Guest Post

Sally Satel

, one of our frequent contributors, presents a very personal and very informative essay.

Adam Cifu

Two summers ago, Erica, my former next-door neighbor, reached out by email. We had not been in touch since senior year in high school in Queens, N.Y. Erica had heard through our old neighborhood grapevine that I had received a kidney transplant. When we spoke the next day, she asked me what advice I could give her about finding a donor.

Now 67, Erica had inherited polycystic kidney disease, PKD, from her late father, who spent years on dialysis. She was about to start home dialysis and was dreading it. She had ruled out “burdening” her own two children, even though both tested negative for PKD. Her older brother was ineligible as he had developed diabetes in middle age,

But what of Linda, Erica’s fraternal twin? Although Linda (and her adult children) had not inherited PKD, she would not donate to her sister. Period. I was stunned. Afterall, Erica said they were close, as I had remembered them being. But what made Linda's refusal even more odd, downright bizarre in fact, was that Erica had given bone marrow to Linda in the early 2000s when she developed Hodgkin's lymphoma.

At first, Linda, now perfectly healthy, was willing to donate – her doctor said that the Hodgkin’s remission would be unaffected. But overnight, or so it seemed to Erica, she changed her mind. Erica implied that she was furious with Linda but did not share with me any speculations about her sister’s change of heart.

Thankfully, a Jewish matching agency came through last July. Three weeks later, Erica, a financial analyst, resumed working full time; two weeks after that, she was commuting from her Long Island home to lower Manhattan.

I've since lost touch with Erica, but I still wonder how her relationship with her sister changed, or whether it has even survived.

Erica’s ordeal brought me back to my own miserable donor-seeking days, which began in August 2004. I was feeling fine during a regular check-up, but blood work showed my kidneys functioning at 16 percent of normal capacity. The cause couldn’t be determined.

Finding a donor was hell. I started out like the mirror-image of Erica. I did not want a kidney from a relative or anyone I knew. I wanted to avoid what’s known in transplant circles as the “tyranny of the gift.” The term was coined in 1978 by the medical sociologists Renee C. Fox and Judith P. Swazey to denote the morphing of overwhelming gratitude at receiving an organ from a relative or friend into a sense of constricting obligation.

I went so far as to sign up on a website called MatchingDonors.com that helps link potential donors and recipients. You describe your pitiful state in the space provided and hope that some magnanimous stranger emails you about becoming your donor. Within a week of submitting my information, I hit it off, you might say, with a Canadian gentleman. You can read the long story here, but the short version is that he ghosted me.

Still seeking an anonymous exchange, I wanted to buy a kidney. But that was illegal. So, I gave in and told friends about my medical situation, hoping they would take the hint. And a number did, but within weeks of offering, they got cold feet. In two cases, husbands threatened divorce.

Then my close friend, Deanna, was scared off by a fellow alto from chorus who happened to be, of all things, a transplant surgeon. “I was telling her that I might donate to you,” Deanna said, “but she scowled and reached in her bag and handed me a paper she’d just published on hemorrhaging during transplant.” Another friend concocted a diagnosis of hypertension, knowing that would keep me from expecting her to volunteer. "I'd do it, but...." she emailed. Then I felt bad, worrying that I'd set her up to lie to me.

Eventually, luck. A once-distant-but-now-dear friend, Virginia, heard from a mutual friend that I needed a kidney and saved me in 2006. When it wore out earlier than expected in 2016, another magnificent soul, a solid-though-not-best-but-now-beloved friend, Kim, became my second donor. Yes, I have been obscenely fortunate.

Since I became invested in the kidney shortage, the waiting list has only grown as people are continuously added to a queue that never comes close to clearing.

In polls, 25 to 50 percent of Americans say they would give a kidney to a stranger. But they do not. While non-directed donations (to strangers) has gone up — from 20 in 2000 to 545 in 2024 — far more are needed to help the over 90,000 who suffer on the list.¹

Among these non-directed donors are walk-the-talk members of the Effective Altruism (EA) crowd. The one with the highest profile is pseudonymous psychiatrist Scott Alexander, author of the wildly popular Astral Star Codex Ten blog.

Alexander, who donated in 2023, was inspired by his friend, Vox journalist Dylan Matthews, who explained his motivation in a 2016 article, Why I Gave My Kidney To A Stranger — And Why You Should Consider Doing It Too. “The only thing I knew about him at the time was that he needed my kidney more than I did,” Matthews wrote. “It would let him avoid the physically draining experience of dialysis and possibly live an extra nine to 10 years, maybe more." That, my friends, is world-class selflessness in action.

Another donor, Abie Rohrig, who was 21 when he gave a kidney to a stranger (who turned out to be a young man about his age), told me that “ideas of EA have had a significant intellectual influence on me — especially the idea of choosing problems to work on that are important, tractable, and neglected to have a large impact.”

As I have written in Sensible Medicine, I want to test whether a generous tax credit could transform the altruistic impulses of thousands — the aforementioned 25 to 50 percent of people who say they would give to a stranger — into action. Getting such legislation passed is an uphill but worthy fight that I share with others.

In 20 to 30 years, human donation will almost surely be a memory from a curious medical past. Organ printing, wearable dialysis devices, and transgenic pigs will save all of us — kidney patients and reluctant friends and family members alike.

But for now, living donation will continue to elicit a range of sentiments from would-be donors. At one extreme, some people see giving an organ as the gratifying act of a lifetime. For those at the other end, it looms as a darkly conflicted prospect.

Until transplantation becomes fully technological, organ donation will remain a unique medical and human drama.

Dr. Satel’s Substack is "Off Label."