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This story was originally published by ProPublica.

Wrapped in a flashy fur coat she’d found at a thrift store for the occasion, Hannah Goetz blew out the candles on her favorite red velvet cheesecake. It was her 21st birthday. The celebration with her family that evening in February 2023 was a milestone not just for her age, but because she was alive.

Three and a half years before, her lungs had collapsed from cystic fibrosis. She was saved by a double-lung transplant that had been allowing her to breathe deeply. Hannah had slowly worked her way back to stable health, overcoming infections and, every day, taking a crucial medication to protect her donated lungs from rejection. Her doctors were optimistic.

Hannah had been feeling well enough to sing karaoke, work as a nanny while taking college classes and begin her first adult relationship, with a Navy sailor. Her 21st birthday gift from her mom was a trip to Nashville, Tennessee, where the two of them and their friends could explore the city’s music scene and cavort in its bars.

Just days after her birthday, though, she was back in the hospital. She’d been feeling her chest tighten, and she struggled for air. By March, Hannah felt as if she were breathing through a straw. Tests showed she was taking in less than half the oxygen of a healthy person.

One of the first questions came from her transplant team’s pharmacist, who had overseen her medications since her operation.

“Did the tacrolimus pills you take change?” he asked.

Most people have never heard of tacrolimus. But to anybody who has received a transplant, it’s nothing short of a miracle. The medication prevents organ rejection. Without tacrolimus, a simple capsule taken twice a day, cells in the blood identify the transplanted organ as a foreign invader and treat it like an infection, trying to rid the body of it. That attack can be fatal.

A team of Japanese scientists discovered tacrolimus in the 1980s, in a fungus found in the soil of a lush, purple-hued mountain north of Tokyo.

Along with another similar drug, tacrolimus radically improved the long-term prospects of transplant patients. The chances that a donated organ would still work after a year roughly doubled for those who used the drugs. Recipients of kidney, heart and liver transplants started living years longer. So did lung patients, but the challenges of those transplants meant the increases in lifespan were smaller.

By the numbers, if Hannah made it past her first year, she could expect her new lungs to give her nine more years of life.

Hannah was in fourth grade in 2012 when doctors figured out that her regular bouts of bronchitis and her struggle to gain weight were caused by cystic fibrosis, a genetic disease that leads to mucus building up in the lungs and other organs. The disease is ultimately fatal.

Ten-year-old Hannah sat listening for hours as a medical team explained the diagnosis to her and detailed how it was treated. The doctors managed to avoid any discussion of mortality, and it wasn’t until Hannah got home that she found the answer she sought online. At that time, the median lifespan was less than 40 years. Mom, she asked, did you know I won’t live as long as most people?

Holly Goetz, a high school teacher who was newly divorced and shouldered almost all of her daughter’s care, tried to reassure Hannah. Her case wasn’t severe, she told her daughter. And new advancements could improve the outlook.

Hannah didn’t dwell on the diagnosis, and she managed to keep up with peers in her Isle of Wight, Virginia, school, playing soccer and singing in musicals. Like any tween, she documented every moment of her life in a series of selfie videos. In one from fourth grade, she chatted to the camera as if she were a jocular TV host, capturing the twice-a-day event when she wore a device that looked like a life preserver and shook her chest to break up the mucus in her lungs. “Here I am, vibrating, whooo!” she trilled in rhythm with the pink vest. She ended the video, “See you next time on Vest Treatment with Hannah.”

Sometimes, she also needed a feeding tube hooked up to her stomach at night to ensure her body absorbed enough calories. And there were occasional two-week stints at the local children’s hospital for a course of antibiotics.

Still, she graduated high school a year early, as a 17-year-old, in June 2019. That month, sporting purple streaks in her hair, she’d gone with her family to the Caribbean to celebrate her achievement. She was looking forward to attending Longwood University, a couple of hours west from her hometown.

One afternoon not long after returning from the trip, Hannah told her mom she was feeling sick. Holly packed up, thinking they were headed to the hospital for a standard “tune up.”

This time, though, Hannah quickly went from sitting up in her hospital bed, mouthing along with the “Frozen” song “Do You Want to Build a Snowman?” to a ventilator in the pediatric ICU. She had pneumonia, which was filling her already clogged lungs with even more fluid. Hannah also had an infection from a rare bacteria that had caused sepsis, a type of potentially lethal inflammation. Before Holly could process what was happening, Hannah was in an ambulance, being transferred three hours north to the better equipped Inova Fairfax Medical Campus.

The doctors said the prognosis was dire: Hannah’s lungs were too damaged to recover, and she needed a double-lung transplant. But the infection was proving insurmountable. Hannah was stuck on the wrong side of an agonizingly thin line: A patient needs to be severely compromised to qualify for a replacement organ; but if they’re too gravely ill, they’re ineligible.

The transplant team proposed something bold. The only way to give Hannah a chance, they said, was to remove both of her lungs — without knowing whether they’d find new ones for her — in the hopes that if they went, so too would the infection. That would clear the way for her to be added to the transplant list.

For four days, Hannah lay unconscious in the ICU with no lungs while machines pumped her heart and tubes the size of garden hoses circulated oxygen through her body. Holly curled her lanky frame into a chair by Hannah’s bedside every night. She prayed first that the infection would clear and then, later, that a lung donor would be found.

The risky move was a success. When Hannah awoke in August, fully conscious for the first time in three weeks, she had no memory of what had happened. Her mom told her everything was going to be OK; she had new lungs.

Hannah spent 67 days recuperating in the hospital. At first, she could only take a few tentative steps from her bed with the aid of both a walker and a nurse. She ultimately strode out of the hospital with her arms flung above her head in triumph. Doctors marveled, saying that Hannah had been saved by her youth and surprisingly healthy body.

Medications are so central to recovery from a transplant that the federal government requires hospitals to assign a pharmacy expert as part of a patient’s team. For Hannah, that person was Adam Cochrane, a specially trained transplant pharmacist with two decades of experience who worked exclusively with lung- and heart-transplant patients.

Cochrane, who has a calm, measured disposition, tried not to overwhelm Hannah and her mom as he taught them about the lineup of pills Hannah now needed to take. The daily regime was critical. She can’t live without these medications, he told them. Hannah would need to take tacrolimus twice a day at the same time every day — for the rest of her life.

Tacrolimus is part of a special category of drugs that work only if the dose is calibrated within a very narrow........

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