Narrative Inquiry in Bioethics

I remarked to a friend, “We haven’t spoken since my arrest!” Alarm and confusion clouded his face, given my half-century of squeaky-clean living. “Cardiac arrest,” I clarified. “The fire department rebooted me.”

An electrophysiologist diagnosed Arrhythmogenic Right Ventricular Dysplasia, prescribed medication, and implanted a defibrillator. For the next three-and-a-half years, he helped me live with a disease I didn’t know existed until he told me I had it.

The disease progressed—an ironic, disease-centric term since its advancement was to my detriment— prompting my cardiologist to recommend seeing someone who specialized in heart failure. I resisted the very idea of heart failure, a terrible term for a struggling organ, but took her advice and scheduled an appointment.

The new cardiologist urged transplant testing, a lengthy process. I agreed, figuring that by the time I needed a new heart in 15–20 years, they’d be rolling off 3D printers.

To record occasional transplant musings and inchoate fears and perhaps, over time, untangle them, I began journaling. I chronicled my passage through the echocardiogram, heart catheterization, 31 tubes of bloodwork, interviews with different clinical specialties, a pulmonary function test in a machine reminiscent of Star Trek’s Transporter, and more. Testing had barely begun when my medication stopped working—a Halloween shock.

I began a harsher medication, underwent an ablation, and spent six weeks in a wearable defibrillator, a vest with abundant wires, and a purse-sized battery pack that made me resemble a character in [End Page 123] the Jetsons. This attire did not bring holiday comfort or joy to the TSA¹ when I flew to visit my sister. As my R-waves faded to a whisper, I swapped the vest for a second implanted defibrillator, substantially more sensitive than the first.

In early 2018, we learned I had qualified for transplant listing, though I wished to get as much mileage as possible from the original engine. My cardiologist warned, “There is no Plan B—no machine, device, or medication for the long-term. You will need a transplant.” He explained that since most cardiac patients have left-heart problems, companies develop products for the left side of the heart. My problem was on the right—a tiny market. He also cautioned that a patient needs to be sick enough to warrant transplant and well enough to remain a candidate, survive the surgery, and recover.

Although clinically I was ready, I was not personally ready. I felt too good to trade an excellent quality of life for the promised miserable post-transplant year. The cardiologist wisely asked if I wanted to speak with another patient. When I requested someone beyond the dreaded first year, he put me in touch with two women who had received new hearts a few years earlier and befriended each other. They soon became my invaluable mentors and cherished friends. I will never forget seeing them stride into our first meeting and thinking, “They are beautiful! They look totally normal!”

By May, climbing four flights of stairs took as much effort as five used to take. Tests confirmed further deterioration and suggested I had 7–13 months of declining health before my heart would give out completely. We chose a date for hospital admission, and I started telling people outside my immediate family. Most were flabbergasted, believing heart transplants were the last hope of the desperately ill. I did not look moribund, though, apparently, I was.

The eight months after my first transplant appointment let me prepare psychologically to bid farewell to my heart—the metaphor for kindness, love, and bravery in our culture—and to welcome a new organ from a generous person less medically fortunate than I.

In the hospital, I met others awaiting their hearts. A sudden intimacy arises when mortal choices catapult people into a medical realm suggestive of science fiction. Add the emotional intensity that accompanies knowing your extended life comes courtesy of a person who breathes no more on this earth and you wonder how an organ recipient integrates sorrow and gratitude.

Two weeks after I was hospitalized, my cardiologist informed me the wait was over...