The last thing that Mayra Ramirez remembers from the emergency room at Northwestern Memorial Hospital in Chicago is calling her family to say she had COVID, was about to be put on a ventilator and needed her mother to make medical decisions for her.
Ramirez, 28, did not wake up for more than six weeks. And then she learned that on June 5, she had become the first COVID patient in the United States to receive a double-lung transplant.
On Wednesday, she went home from the hospital.
Ramirez is one of a small but growing number of patients whose lungs have been destroyed by the coronavirus and whose only hope of survival is a lung transplant.
“I’m pretty sure that if I had been at another center, they would have just ended care and let me die,” she said in an interview Wednesday.
The surgery is considered a desperate measure reserved for people with fatal, irreversible lung damage. Doctors do not want to remove a person’s lungs if there is any chance they will heal. Overall, only about 2,700 lung transplants were performed in the United States last year.
Patients must be sick enough to need a transplant and yet also strong enough to survive the operation, recover and get back on their feet. With a new disease like COVID-19, doctors are still learning how to strike that balance.
“It’s such a paradigm change,” said Ramirez’s surgeon, Dr. Ankit Bharat. “Lung transplant has not been considered a treatment option for an infectious disease, so people need to get a little bit more of a comfort level with it.”
On July 5, he performed a similar operation on a second COVID patient, Brian Kuhns, 62, from Lake Zurich, Illinois.
Kuhns spent 100 days on life-support machines before receiving the transplant. Before becoming ill, he had thought COVID was a hoax, his wife, Nancy Kuhns, said in a statement issued by the hospital.
Brian Kuhns said, “If my story can teach you one thing, it’s that COVID-19 isn’t a joke.”
Two more patients at Northwestern are awaiting transplants — one from Chicago and one from Washington, D.C. — said Bharat, who is chief of thoracic surgery and surgical director of the lung transplant program.
A patient is to be flown in from Seattle next week, and the Northwestern team is consulting on still another case with a medical group in Washington. Other transplant centers are considering similar surgeries, Bharat said.
Last Friday, a COVID-19 patient transferred from another state underwent a double-lung transplant at the University of Florida Health Shands Hospital in Gainesville, Dr. Tiago Machuca said.
While other centers have also sought to refer cases, most of the patients had other serious medical problems that ruled them out, he said.
In some cases, Bharat said, hospitals appeared to have waited too long to recommend a transplant. One patient being referred to his center seemed like a good candidate but then had major bleeding into the lungs as well as kidney failure, and the surgery was no longer feasible.
“I think people need to recognize this option earlier and just start at least talking about it before it gets to that point,” Bharat said.
In some cases, he said, insurers’ reluctance to cover the surgery or to pay for travel to transfer patients has led to delays.
“This is so new to our field,” Machuca said. “It will be a challenge for physicians to determine which patients truly are candidates and what’s the timing. We don’t want to do it too early when the patient still can recover from COVID lung disease and resume with good quality of life, but also you don’t want to miss the boat and have a patient where it’s futile — the patient is too sick.”
He said that, in some cases, extensive rehabilitation has brought about recovery in COVID patients who were being considered as possible transplant candidates.
Because the extensive lung damage in COVID patients makes transplant surgery especially difficult, most patients would be referred to major transplant centers that are best equipped to perform the risky operations and provide the intensive aftercare that patients need, the surgeons said. Brian Kuhns was transferred to Northwestern from another health system.
Before she became ill, Ramirez, a paralegal for a law firm specializing in immigration, was working from home and having her groceries delivered. She was in good health but had an autoimmune condition, neuromyelitis optica, and took medication that suppressed her immune system and might have made her more vulnerable to the coronavirus infection.
She was ill for about two weeks and consulted with a COVID hotline about her symptoms. At one point, she headed to the hospital but then turned back without going in. She dreaded the idea of being admitted and told herself she would recover.
But April 26, her temperature reached 105 degrees Fahrenheit, and she was so weak that she fell when she tried to walk. A friend drove her to the hospital. When doctors told her that she needed a ventilator, she had no idea what they meant. She thought it meant some kind of fan, like the word in Spanish.
“I thought I’d just be there for a couple of days, max, and get back to my normal life,” she said.
But she spent six weeks on the ventilator and also needed a machine to provide oxygen directly into her bloodstream.
“The entire time, I had nightmares,” she said.
Many of the nightmares involved drowning, her family saying goodbye, and doctors telling her she was going to die.
The disease was relentless. Bacterial infections set in, scarring her lungs and eating holes in them. The lung damage caused circulatory problems that began to take a toll on her liver and heart.
The doctors told her family in North Carolina that it might be time to come to Chicago to say goodbye, and her mother and two sisters made the trip.
But Ramirez held on, cleared the coronavirus from her body and was placed on the transplant list. Two days later, on June 5, she underwent a 10-hour operation.
She woke scarred, bruised, desperately thirsty and unable to speak, “with all these tubes coming out of me, and I just couldn’t recognize my own body.”
The nurses asked if she knew the date. She guessed early May. It was the middle of June.
She was not told she’d had a lung transplant until several days after she woke up.
“I couldn’t process it,” she said. “I was just struggling to breathe, and I was thirsty. It wasn’t until weeks later that I could be grateful, and think there was a family out there who had lost someone.”
Because of concerns about infection, her family could not visit after the surgery. At a news conference Thursday, Ramirez said, “The hardest part was going through this alone.”
She suffered from anxiety and panic attacks, she said. Eventually, the rules were relaxed, and her mother could visit. But it was wrenching to say goodbye each day.
Before her illness, she worked full-time and enjoyed running and playing with her two small, scrappy dogs. Now she still feels short of breath, can walk only a short distance and needs help to shower and stand up from a chair. The dogs were overjoyed at her homecoming, but their energy was a bit much. Her mother, who lives in North Carolina, took time away from her job at a meatpacking plant and traveled to Chicago to help her recover.
Ramirez said she was learning to use her new lungs and getting stronger every day.
She is looking forward to getting back to work, but she still has a way to go. Her family is assisting her, and a friend started a GoFundMe page to help pay the bills.
“I definitely feel like I have a purpose,” Ramirez said. “It may be to help other people going through the same situation that I am, maybe even just sharing my story and helping young people realize that if this happened to me, it could happen to them, and to protect themselves and protect others around them who are more vulnerable. And to motivate and help other centers around the world to realize that lung transplantation is an option for terminally ill COVID patients.”
The outlook for Ramirez is good, Bharat said, because she is young and healthy. She will be on anti-rejection medicines for the rest of her life. Transplanted lungs can still be rejected, he said, but he has seen some last 20 years. And patients may be able to receive a second transplant.
“I think from now on she’ll continue to get stronger and stronger,” he said. “She asked if she could go sky diving. We’ll probably get her there in a few months.”