COVID-19 patients who were first in US to undergo double lung transplants at Northwestern share their stories

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CHICAGO — Mayra Ramirez’s family hadn’t talked to her in weeks.

The 28-year-old was at Northwestern Memorial Hospital on a ventilator with a severe case of COVID-19. She wasn’t allowed visitors. Doctors would call her mother in North Carolina with updates.

Then, one day, her family was told to head to Northwestern as quickly as possible.

“They were told to come, that I wasn’t going to make it past the night, so they took the first flight out of Wilmington, N.C.,” Ramirez said. “They made the trek just with the intention of saying goodbye.”

By the time Ramirez’s family arrived, doctors had stabilized her. But they asked her mother to make a decision: Would she allow Ramirez to become the first COVID-19 patient in the country to undergo a double lung transplant?

Her mother, Nohemi Romero, said yes.

In June, Ramirez became the first COVID-19 patient in the U.S. to undergo a double lung transplant after her lungs were severely damaged by the disease. Ramirez and Brian Kuhns — a Lake Zurich man who was the second COVID-19 patient to receive a double lung transplant — spoke publicly about their experiences for the first time at a news conference at Northwestern on Thursday.

Doctors have called that first surgery a “milestone” in care for patients with severe cases of COVID-19. Such transplants aren’t right for every critically ill COVID-19 patient, but can be a lifeline for some, said Dr. Ankit Bharat, chief of thoracic surgery and surgical director of the Northwestern Medicine Lung Transplant Program. Transplants can be performed on patients who’ve eliminated the virus and have no other significant organ failure, said Dr. Rafael Garza Castillon, a thoracic surgeon.

Northwestern is now considering performing the procedure on other patients, Castillon said, though he said he could not provide further details.

“We are all learning together and sharing best practices, and now lung transplant is part of COVID-19 care,” Bharat said.

Ramirez, who is now at home, said she’s feeling much better, though she’s still working to rebuild her strength and endurance. She still feels fatigued doing everyday tasks.

Before she fell ill, she said, she was an independent, active person. She moved to Chicago in 2014, after growing up in a small, rural town in North Carolina, to work as a paralegal. She had an autoimmune condition but was otherwise healthy.

She loved spending time with her two dogs. She admitted to eating junk food on occasion, but exercised. Shortly before becoming ill, she went on a 3-mile run.

When Gov. J.B. Pritzker implemented the stay-at-home order in March, she started working from home.

But soon, she started to feel sick. She lost her senses of taste and smell, felt dizzy and had headaches. One day, she fainted, and decided it was time to go to the emergency room.

When she arrived, “Everything happened so quickly,” she said.

“I was told to hurry up (and) change,” she said. “I was asked who would be making my medical decisions for me. That’s when I told them it would be my mother and eldest sister who all live in North Carolina. I only had a couple minutes to contact them to let them know what was going on before I was intubated.”

Ultimately, she spent six weeks in intensive care at Northwestern. She underwent the lung transplant on June 5. She didn’t wake up until mid-June.

She didn’t know at first that she had undergone a lung transplant.

“I looked at myself and couldn’t recognize my body,” she said. “I didn’t have the cognitive ability to process what was going on. All I knew was that I wanted water.”

It wasn’t until weeks after the transplant that she realized: “There’s a family out there that’s grieving their loved one. I have that person’s lungs.”

Now, as she continues to recover, Ramirez is grateful for the care she received and the opportunity she was given.

She said she doesn’t feel special, but “I think that I definitely have a purpose, and if that purpose is simply telling my story to raise awareness for people to stay safe and take this condition seriously and for centers to understand that lung transplants for terminally ill COVID patients is an option, then I’m fine with that.”

Kuhns, 62, is also recovering. The husband, father and grandfather sought medical care in March after experiencing stomach pain and severe headaches. He didn’t think COVID-19 was a serious threat, so he had continued living his life normally despite the illness’ spread.

“I was perfectly healthy,” Kuhns said. “This thing took me down hard.”

He received his transplant July 5.

“We finally got some hope,” said Kuhns’ wife, Nancy.

She said she’s been overwhelmed with all the support the family has received, and has advice for those who also think COVID-19 is not a big deal.

“Stay safe and listen to what they’re telling you about washing, masks and everything,” Nancy Kuhns said. “It’s not a joke whatsoever. It’s not a hoax.”

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