Dad gets cutting-edge double lung transplant after nearly dying of COVID-19

Leo Castillo came to the United States from Honduras nearly 21 years ago with a bright future in mind. After settling in Washington, D.C., and starting a family, he started working toward a personal dream.

“He really likes trucks. He spent a lot of time looking at many catalogues. So one day I asked him, ‘Why do you spend so much time looking at those magazines?’” his wife, Lesly Villatoro, told “Nightline” in Spanish. “[I told him it’s] better to buy it … because you keep showing me photos and I don’t want to see any more photos. Buy it.”

Three years ago, Castillo finally bought his prized red semi truck and then drove it all around the country delivering essential construction supplies while soaking in the country’s beauty.

Still, he always loved coming back home to his kids. 

“I'd be so excited to see him. Like, seeing his location. ‘Oh, my gosh, he's gonna be home in 30 minutes,’” said Castillo’s 16-year-old daughter, Gaby Castillo.

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“When the girls were on vacation, we took off in the truck,” Villatoro said. “We drove through many states, all of us in the truck, and I think that’s what he loves: to visit the states, to get to know all of the United States.”

But all their adventures came to a grinding halt last May when COVID-19 ripped through their home. The virus infected their son Christian first and then Villatoro fell ill -- both with relatively mild symptoms -- and they were able to recover at home.

Shortly thereafter, Castillo began feeling ill and he was eventually hospitalized. Villatoro received a call from a doctor telling her that her husband might not recover.

“My reaction was only, ‘You’re not God… When his heart stops beating then you can tell me that he’s dead,’” she said. “But my faith … is that he won’t die.”

Castillo made it through the night, but his lungs had been so damaged by COVID-19 that doctors told Villatoro that his only shot at life would be to receive a double lung transplant. He’d have to go to Chicago to get it.

At the time, the risky surgery had only been performed on two other patients at Northwestern Memorial Hospital whose lungs had been ravaged by COVID-19. Mayra Ramirez was the first.

“I wish I wasn't first,” said Ramirez. “But since I am, I feel like I have more of a duty to remain alive to give hope… I do know that I'm here for a purpose.”

Ramirez, a paralegal, said that as soon as the pandemic hit Chicago, she started working from home and avoided leaving her house. The then 28-year-old even got her groceries delivered and had a dog walker walk her dog so that she would not have to go outside. She says it’s a mystery to her how she contracted COVID-19.

In April 2020, she said she went to Northwestern Memorial Hospital in Chicago barely able to walk. In the emergency room, she tested positive for COVID-19.

Doctors told Ramirez she would need to be intubated. She only had enough time to call her mother with the somber news and to designate her as a medical proxy before being placed on a ventilator.

“It's kind of a blur. I do know that I felt a lot of pain and I endured a lot of nightmares,” she said. “A lot of my nightmares [were] … of drowning, I guess because I couldn't breathe.”

Ramirez’s dire situation caught the attention of the hospital’s chief thoracic surgeon, Dr. Ankit Bharat.

“She was young. … Such a loving person who's so kind,” he said. “And then you see her in the [intensive care unit], I mean, all swollen. She's just critically ill, she's about to die. And so it was that sense of, I would say despair, that we wanted to help.”

Bharat had performed hundreds of lung transplants prior to the pandemic. By spring 2020, he began to think the surgery might save the lives of those whose lungs had been decimated by the virus.

“When the pandemic hit us, it kind of put us on our knees,” he said. “We saw a number of these people die right in front of our eyes, and we just did not know what was going on.”

No other doctors in the U.S. had ever performed the transplant on a patient whose lungs had been destroyed by COVID-19, and the stakes were high for Bharat and his surgical team.

Bharat said there was “tremendous risk” for both his personal reputation and for the Northwestern Medicine Lung Transplant Program.

“If she had not survived, that could potentially be the end of transplants for COVID-19,” he said.

But Bharat believes that no matter how desperate a situation, there’s always reason to have hope.

“I grew up in India. I wanted to be an Air Force pilot,” he said. “But we had a family event … that was an inspiration for me to pursue medical school.”

“[My brother Asheet] had a pretty traumatic brain injury, and we were all in a state of shock,” he remembered. “But there were a number of talented physicians and surgeons who kept him alive for two or three days. It gave us time, a little bit [of] hope that he may survive. For me, as his elder brother, it gave me time to sit by his bedside and just apologize for some of the big brother things that I may have done to him.”

Asheet died at only 9 years old. Bharat carries Asheet’s memory and the important hope he learned to have from the experience through a year-long battle against COVID-19. The doctor said he hopes his brother would be proud of him today.

Bharat and his team became the first in the country to perform a successful double lung transplant on a patient whose lungs were damaged by COVID-19 last June, paving the way for more patients like Castillo.

Determined to save her husband, Villatoro researched and learned of Bharat’s work.

“I searched the internet for people who had received transplants, and that’s how I found Mayra [Ramirez],” Villatoro said. “If they need to transfer him there, I will move for his sake.”

After speaking to Villatoro for the first time, Bharat knew he had to try to save her husband’s life, he said.

“Lesly was so fierce. She was so committed to helping Leo. She did not even hesitate when I talked to her,” Bharat said.

“I knew that when you have a partner like Lesly, she would not let Leo fail,” he said. “I thought that Lesly was gonna be a fighter. And [by] extension, I felt Leo would also be a fighter.”

Castillo was flown from Washington D.C. to Chicago’s Northwestern Memorial Hospital in hopes of receiving the transplant.

Villatoro temporarily moved into a friend’s house in the city, commuting two hours each way to spend every possible moment with her husband. Their daughters, Gaby and Camila, remained in Washington, D.C., with their grandmother, often on video calls with their father in the hospital.

“I wasn't used to seeing him with all of that stuff he had,” said Gaby, who was 15 at the time. “It looked like he couldn't even move. He looked uncomfortable.”

Younger sister Camila said it was emotional to be without her parents.

“I felt alone. My dad brought happiness into my life,” the 12-year-old said. “So it was just like him gone and my mom gone too, it was just a lot.”

Six days after being listed for the transplant, Castillo was able to receive new lungs. It was a bittersweet moment for the family.

“You think about the family who lost that family member … you are grateful for that person, for that donor,” Villatoro said.

Bharat says the original lungs of COVID-19 patients who need transplants “look like overcooked steak. [They] don’t perform any gas exchange, they are extremely rubbery and very heavy, and they are very friable and bleed easily at the same time, and full of infection -- not COVID-19 but secondary infections.”

On operation day, Castillo went into surgery at noon. Once the donor lungs were removed from the donor around 2 p.m., doctors only had six hours to implant the lungs in Castillo before they were at risk of deterioration. Bharat was able to implant them within five hours.

By 6 p.m., Castillo had new lungs and, less than an hour later, they were inflating.

Castillo spent five months recovering in a combination of the hospital and an in-patient rehabilitation facility, before reuniting with his family in their new home.

While recovering in rehab in December, Castillo said a "new life" was beginning for him after receiving the transplant. "I'm happy," he said.

Castillo must stay in Chicago under Bharat’s care for a year following his surgery. In the meantime, his daughters moved to Chicago to be with their father, while participating in remote learning with their Washington, D.C., classmates.

Recently, the family has relished in the celebrations they’ve had, like Castillo’s long-awaited homecoming and Gaby’s 16th birthday. But they’re also wary of the uphill climb Castillo still faces.

“One of the biggest problems after double lung transplant, just like any organ transplant, is the development of what we call chronic rejection,” said Bharat, adding that about 40% of patients can experience it within the five years of receiving a transplant.

“The good news about that is only 10% to 15% experience the most severe form of chronic rejection to the point that [they] need a re-transplant,” he said.

While their long-term outcomes remain unclear, Bharat says he’s “optimistic” that both Castillo and Ramirez’s will ultimately be “the same, if not better” than patients who had chronic lung failure due to conditions like chronic obstructive pulmonary disease or cystic fibrosis, for example. He explained it’s because both patients were healthy before COVID-19 suddenly ravaged their lungs.

Nine months after her pioneering transplant, Mayra Ramirez is also cautiously optimistic. Still, she currently takes more than a dozen medications daily, requires weekly in-home nursing assistance, continues to have nightmares and suffers from post-traumatic stress disorder.

She said she takes pride in achieving personal milestones, like running for a full minute.

Ramirez has also developed a unique and meaningful friendship with Castillo and his family, and has even motivated him to exercise with her.

“She always asks me how Leo is doing. I ask her how she’s doing, and she tells me to … not give up, that life has to go on. ‘I am here, too. Fighting,’ she said to me, ‘But I am not giving up either,’” Villatoro said.

A crowdfunding page called “Lungs for Leo: COVID-19 Survivor” will benefit Castillo and his family, helping them cover medical bills and living expenses in Chicago. For his family, the joy of having Castillo back home is priceless.