Madison, Wis. – When 28-year-old lung transplant recipient Darlene Johnson walked out of University Hospital last month, she was not only defying the odds of a grueling 10-month medical nightmare, she was fulfilling a promise she’d made to herself when the possibility of leaving the hospital alive was anything but certain.
“I had set a goal for myself that I was going to make it home to celebrate my daughter’s third birthday in July,” Johnson said. “There were definitely some days when I didn’t think I was going to make it, days when I’m sure nobody thought I was going to make it. So, to walk out of the hospital with my husband beside me, after all we’d been through, was really something special.”
To say the Johnsons had been through a lot is an understatement. The fact that Darlene reached that goal at all was an extraordinary combination of grit and determination, not just from Darlene and her husband, Lincoln, but from everyone who came together to help her overcome what many believed to be insurmountable odds.
Darlene’s long journey home started in Sept. 2021, when she and Lincoln were both infected with COVID-19. Darlene was 37 weeks pregnant with the couple’s second child. While Lincoln’s symptoms resolved quickly, Darlene’s case grew far more severe. She was admitted Sept. 15 to UW Health SwedishAmerican Hospital in Rockford, Ill., where Darlene’s doctors decided to deliver her baby three weeks early, which they hoped would give her a better chance of fighting the worsening infection in her lungs. But after spending only a single day with her new daughter Hazel in the mother-baby unit, Darlene took a turn for the worse and was transferred to the hospital’s intensive care unit.
When Hazel was allowed to go home a couple of days later, Lincoln stood in the hospital parking lot with Hazel in his arms and waved to Darlene in the window. It would be one of the last images Darlene would remember from that time.
Darlene soon lost the ability to breathe on her own and was put on a ventilator. Over the next few weeks, one of her lungs collapsed, and then the other. On Oct. 26, doctors told Lincoln that he and the girls needed to come to say their final goodbyes to Darlene because they were convinced she wouldn’t survive the evening.
That night was the first time the Johnson family, all four of them, were able to be in the same room together since the day Hazel was born. Staff helped the family make keepsakes for the girls – colorful imprints in paint of the family’s hands and a recording of Darlene’s heartbeat. They took what Lincoln believed would be their first and last family photo together.
“This isn’t how it was supposed to be,” Lincoln said. “We were supposed to grow old together, raise our family and live our lives. The idea that I would have to raise our girls without Darlene broke me.”
That night friends and family gathered outside Darlene’s hospital room and in her hometown for candlelit prayer vigils, which Lincoln said lifted his family’s spirits.
To everyone’s surprise, Darlene survived the night and even briefly started to improve, only to have her condition worsen again a few weeks later. Once again Lincoln and the girls were summoned to the hospital, and once again Darlene made it through the night. As miraculous as it felt, Darlene’s doctors and Lincoln (himself a third-year medical student) knew that her damaged lungs would not be able to sustain her much longer. She needed to be transferred to a hospital that had the resources and expertise to keep her alive and help her get strong enough for the lung transplant she now needed to live. All the hospitals and doctors they contacted around the country turned down Darlene’s case except for one.
Dr. Erin Lowery, transplant pulmonologist at UW Health, remembers the night she first heard about Darlene’s case.
“I got home from work really late and listened to a voicemail from a doctor I knew in Rockford,” Lowery said. “We were in the middle of a really busy COVID surge at the time, so these kinds of calls were not necessarily that uncommon, but something about this one intrigued me. Although it was very late, I called Darlene’s husband that night and listened to their family’s story. I knew we had to help her.”
Lowery consulted with her colleague, Dr. Dan McCarthy, cardiothoracic surgeon, UW Health, who had by then developed a record and reputation for saving patients with the most severe cases of COVID-19. Together they decided to take her case and have Darlene transferred by air to Madison via UW Health Med Flight.
UW Health Med Flight is one of the few critical care transport services in the country that specializes in using nitrous oxide onboard – expertise that turned out to be essential to keeping Darlene alive on the flight from Rockford to Madison.
“When we first met Darlene, I thought the odds of getting her through this successfully were slim,” McCarthy said. “To be honest, I think the odds were far more likely that she wouldn’t make it out of this.”
Shortly after arriving at University Hospital, Darlene was put on extracorporeal membrane oxygenation, or ECMO, which took over the majority of Darlene’s lung function while a comprehensive team of UW Health doctors, nurses, and specialists worked for the next four months to not only help her survive but grow strong enough for lung transplant surgery and the subsequent challenging recovery that would follow.
“I had so many wonderful nurses, doctors and staff working on me while I was there,” Darlene said. “I had to undergo so many therapies just to get me strong enough to be eligible for the transplant waiting list. I had to re-learn how to sit, how to stand, how to walk, write and breathe. I had to relearn how to eat and swallow again. Everyone there was invested in my recovery.”
After months of hard work, Darlene finally became eligible for transplant and received the gift of life in March 2022. Darlene said she’s incredibly grateful to everybody who fought for her when she couldn’t fight for herself, and she hopes that her recovery is a reminder to all the people who helped her survive (family, friends, her community of faith, and health care team) that their work sends ripples into the world.
“Words can’t describe how grateful I am to everyone who helped me, and that includes the donor and their family for making the decision to give part of themselves to me,” Darlene said. “Without them, I wouldn’t be here today.”
On July 13, 302 days after she was first admitted, Darlene left her hospital room to find a hallway lined with the caregivers who’d come to know, care for and love her. Darlene stood up from her wheelchair and walked out of the hospital with Lincoln, her biggest champion of all, by her side. They drove home together where they were finally united with their two daughters, Josie and Hazel, three days earlier than the goal Darlene had ultimately set for herself.
“This is truly a success of the entire UW Health system, from the OB and ICU teams in Rockford to everyone who cared for Darlene here in Madison,” Lowery said.
McCarthy agreed and said the experience is among the most memorable of his career.
“This has been one of the most satisfying professional experiences that I can think of,” he said. “Being a part of the incredible teamwork needed to get her to where she is today is the kind of experience that provides deep professional and emotional satisfaction.”