Run It Like a Startup: Making Choices in the Face of a "Poor Prognosis"
When the U.S. transplant system gave up on Chad, Heidi K. Carson rewrote the script on medical caregiving—and what it means to win.
On Christmas Day 2018, Heidi K. Carson sat in the basement of a Seoul hospital eating Domino’s pizza with her sister-in-law. She had been discharged about a week. Half her liver was gone, given to her husband Chad, who was upstairs in the ICU on a respirator, learning how to breathe again.
Chad was 46. A startup guy with a PhD in computer science. No smoker, no drinker, fit. He had elevated liver enzymes for fourteen years before anyone could explain why. By the time the picture clarified, in 2017, he had cryptogenic cirrhosis on top of myelodysplastic syndrome with a TP53 mutation, which the biopsy report described in two unmistakable words: poor prognosis. The MDS progressed to acute myeloid leukemia. His marrow needed a transplant. His liver needed a transplant. Either one was risky on its own. Together they were a puzzle most American hospitals would not touch.
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Running the Diagnosis Like a Startup
TP53 is known as the guardian of the genome because of its protective role. When it is mutated in MDS, the survival numbers fall off a cliff. Contemporary reviews still frame transplant for TP53-mutated MDS as “utility or futility,” with early relapse rates that gut the curative intent. Heidi and Chad were not delusional about any of this. The first useful piece of advice they got came from Heidi’s sister-in-law: run it like a startup. They were both startup people. They knew most startups don’t make it either.
Founders cannot make the odds better. They can make the choices. Heidi and Chad got on planes. They flew to a hospital on the East Coast, where they got their first usable plan: come off chemo long enough for a liver, then go back on long enough for a marrow transplant. Then they found out Chad had been removed from the U.S. liver transplant list. His co-morbidity made him a bad bet for a deceased-donor liver. So Heidi offered him half of hers, and they flew to Seoul, where one of Chad’s doctors had connections.
South Korea performs more living-donor liver transplants than almost any other country. The center where Chad was treated was doing close to 400 a year.
Korea performed 1,188 living-donor liver transplants in 2019, about 75% of all liver transplants the country performed that year. The United States, with six times the population, performed fewer than 600.
Putting on the Oxygen Mask
That is the part of the story most caregivers will recognize. Heidi was alone in a country she did not know, recovering from major surgery, with her husband in an ICU bed where the machines were doing his breathing for him. Her sister-in-law came for a stretch. A Domino’s pizza in a hospital basement was the high point of a holiday.
One day, weeks in, Heidi got on the subway and went to Gangnam. She walked K-Pop Road. She ate hummus at a Middle Eastern restaurant because she had eaten too much Korean food. She calls it the day she put her oxygen mask on, and the specifics matter. “Put your oxygen mask on first” gets said to cancer caregivers as if it means something on its own. Heidi made it specific. K-Pop bears. Hummus. A reminder that there was a world she would rejoin.
Chad came home. They were home for four months. The bone marrow transplant happened in July of 2019. It never engrafted. The TP53 mutation, the cobwebs the nurses talked about, the body that had given so much to the liver transplant it could no longer fight a second battle. He died in October, 2019.
Defining Success Beyond the Outcome
Heidi does not call this losing.
There is a version of this story where the lesson is to fight harder, and another where the lesson is to let go sooner, and both are wrong. Heidi told me: I don’t like people to think the outcome defines the success. The research is catching up to her. A 2024 systematic review and meta-analysis in PLOS One found that post-traumatic growth among people bereaved from cancer is real, measurable, and correlated with social support, meaning-making, and the closeness of the relationship the caregiver had to the person they lost. Bereaved caregivers can, in the language of the literature, become genuinely changed for the better. Heidi calls that transformation “also a form of success.”
The Legacy and the Work
The work she is doing now is the proof.
Advocacy: Heidi sits on the board of Team Telomere, the nonprofit serving families with telomere biology disorders, the umbrella diagnosis underneath Chad’s leukemia and his liver failure.
Clinical Guidelines: After his death, she helped write a chapter for the second edition of the Telomere Biology Disorders: Diagnosis and Management Guidelines, published in 2022. Since the new edition came out, more families are getting diagnosed earlier.
Research: She has funded a research grant in Chad’s name. There are two clinical trials in progress now that did not exist when Chad needed them. She calls them shots on goal. The cure, she likes to say, is her favorite four-letter word.
The Windows That Opened
Back to that basement in Seoul. A woman on Christmas. Half her liver gone. A husband upstairs who would die in ten months. What she could not see from there: her sister-in-law’s pizza, her kids learning to do their own laundry, a clinical guideline she helped publish, and the people she will never meet whose diagnoses came faster because of what she wrote.
The door of Chad closed, she told me. But many windows have opened.
That is the win.
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