MUSC Health's 1st COVID-19 lung transplant patient heads home; Sumterite living near hospital to finish rehab after year-long journey

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When Ryan Nacovitch, of Sumter, celebrated his 35th birthday in March 2020, he was a typical healthy guy, just two months shy of his first wedding anniversary.

Sumter County had recorded two deaths from COVID-19, and Gov. Henry McMaster had already ordered schools across the state to close temporarily, yet the pandemic had barely begun.

Sumter had yet to cancel its iconic Iris Festival.

The Centers for Disease Control and Prevention had yet to recommend even voluntary mask-wearing.

Sumter had yet to pass a mandatory mask mandate.

His mother, Laura Nacovitch, had yet to contract COVID-19 and die during the summer spike.

He and Melissa, his wife, had yet to contract COVID-19 in the post-Thanksgiving spike.

And Ryan had yet to spend 116 days hospitalized; to be at the point where, as one of his doctors said, he was maintaining the "bare minimum numbers to stay alive" while getting the most medical support possible at a center without a specialized oxygen-delivery machine called ECMO.

Or to be transferred from his home hospital to MUSC Health to undergo a double-lung transplant after COVID-19 ravaged his lungs.

When he celebrated his 36th birthday, it was in Ashley River Tower at MUSC Health. He was in the hospital, but he was once again breathing on his own, thanks to the new set of strong donor lungs in his chest.

And on April 8, Ryan and Melissa walked down the hall from his room to a ceremonial bell, where dozens upon dozens of people who had cared for him at some point - doctors, nurses, physical therapists, occupational therapists, respiratory therapists, perfusionists and more - waited to cheer for him.

"This is a time for us to gather and take a minute to celebrate and reflect on Ryan's journey and Melissa's journey," Heather Geffert, R.N., heart and lung transplant coordinator, told the group. "We're going to celebrate that journey and Ryan's incredible fight. His tenacity. His drive was relentless in getting us to this point today."

National outlook

It's unclear, at this point, how many people who have had COVID-19 have required transplants. Timothy Whelan, M.D., medical director of the Lung Transplant Program at MUSC Health, said it seems that fewer than 100 people across the country have had lung and/or heart transplants following COVID-19. He thinks Ryan was the first such patient in the Carolinas, he said.

Nor is it clear why people have such different experiences with COVID-19.

"I've seen people who are a lot healthier than me die of COVID," Whelan said.

With most illnesses that hit the lungs, people either fully recover or go on to develop multisystem problems and die, he explained. But that's not the case with COVID-19. "We are seeing that there are people who live through this and, instead of having a lung injury that will slowly get better with time, they seem to just develop dense scarring, or fibrosis." That scarring is irreversible and means the person needs supplemental oxygen. In some cases, it's meant that the patient needed an entirely new set of lungs. But again, doctors are still learning why COVID-19 might destroy one person's lungs while barely affecting another.

"I don't know why it happened to him," Whelan said.

The diagnosis

Ryan was dragging in early December. He and Melissa were helping one of her children to move into an apartment in the Upstate, and he just didn't have any energy. The next day, Melissa started to feel poorly, so they went to get COVID-19 tests, even though Ryan was pretty sure it was just a cold.

It was COVID-19. They didn't know it, but Sumter - and the rest of South Carolina - was at the start of another vicious spike in cases.

After learning they had COVID-19 on Dec. 6, they went home to quarantine and recover, but on Dec. 9, with Ryan feeling worse, they went to Prisma Health Tuomey Hospital in Sumter, where they learned he might be developing pneumonia. At home, they used a pulse oximeter to monitor their blood oxygen levels. Normal blood oxygen levels should be between 95% and 100%. When Ryan's hit the 60s on Dec. 12, Melissa packed him up and drove him to the hospital.

At the hospital, Ryan's condition continued to worsen. He suffered a pneumothorax, or collapsed lung. Already, the doctors there were talking about getting him on a lung transplant waiting list. Whelan said he consulted with the Tuomey team and was able to clear some insurance hurdles to allow Ryan to come to MUSC Health for evaluation when Ryan's condition grew even worse, requiring a ventilator.

Ryan and Melissa remember that moment. They were both out of COVID-19 quarantine by then, but Tuomey had reinstituted visitor restrictions because the pandemic had spiked again, so they communicated via texts.

"It was seven o'clock in the morning. I was getting ready for work, and he said, 'I'm so sorry.' And I was like, 'Why?' He said, 'I'm having trouble breathing, and they're going to put me on a ventilator,'" Melissa said.

The nurses helped them to FaceTime, and then Ryan was vented.

"Him going on the ventilator was very frightening for him," Melissa said. "And for me."

That was Jan. 12, exactly a month after he had been admitted. That timeline is pretty unusual, Whelan said, as most COVID-19 patients who end up on a ventilator do so early in the course of the disease. With his condition so grave, Melissa was looking to both MUSC Health and Duke University Hospital to see which center would have space first for Ryan.

"MUSC got him first, and we're thankful," Melissa said. "MUSC has saved his life and treated us like family."

Preparing for transplant

Jessica Mullins, M.D., was the critical care doctor on call when Ryan arrived on Jan. 16. He was barely hanging on, and the doctors figured that if he was going to recover on his own, they would have started to see signs of improvement already.

"We know COVID takes a long time to get better, but he had not gotten any better," she said.

Yet Mullins saw Ryan's fighting spirit. "He's a trouper," she said.

Communication is a common frustration for patients on ventilators because they cannot speak and can be too weak to write. Because it appeared Ryan would be on the ventilator for a while, Mullins got him a special speaking valve and had a speech therapist teach him how to use it.

But, she added, "I told him if I got him the valve, then the first thing he had to say was that Dr. Mullins was his favorite doctor. And he held true. He's a trouper even when I ask him to do stupid stuff."

But most of what she asked wasn't so lighthearted. Although the possibility of a lung transplant had already been raised, Ryan wasn't strong enough for the surgery when he first arrived. He needed nutritional support as well as physical therapy to build him back up.

The "deconditioning" after being ill and bedbound since early December had left him incredibly weak. But unlike other patients whose underlying conditions ruled them out as transplant candidates, this deconditioning could be reversed, Mullins said.

"I got a text from Dr. Mullins early in February that said, 'We have kind of a long shot, but this is really his only hope. You need to be able to get him to walk,'" said Alex Myers, physical therapy team lead at ART.

By that point, Ryan had been placed on ECMO, or extracorporeal membrane oxygenation, a device that pumps oxygen directly into the bloodstream to allow the lungs to rest. Although the process can give patients and doctors the necessary time to get a situation under control, it also comes with risks of complications and must be constantly monitored.

At her first session with Ryan, Myers was able to get him to sit on the edge of the bed for 15 seconds.

That was it. Fifteen seconds.

"I remember thinking, 'Oh my goodness, we have our work cut out for us.' Medically, he couldn't tolerate doing more than that. It wasn't that he didn't want to," Myers said.

But Ryan was determined. And Melissa was by his side, coming to his hospital room every day and returning at night to the garage apartment of a friend of a friend. The care team universally credits Melissa for her role in Ryan's recovery.

"Half of his resilience is his incredible spouse, who has been through so much and has been here in the most amazing manner," Myers said.

Within a week of that first session, Ryan was standing. Soon he was walking. For nearly three weeks before his surgery, he was walking 300 to 400 feet each day. He also rode a recumbent bike in his room. In addition to getting strong enough for surgery, he had to strengthen his legs in preparation for life immediately post-surgery, when he wouldn't be able to use his arms to push up from a lying or sitting position. Pushing up with the arms would exert force on the incision through his sternum, potentially interfering with healing.

Once Ryan was ready for surgery, it was a matter of waiting for lungs to become available.

"Every day when you're critically ill, every hour that you have to wait to get the gift can be the difference between getting one and not," Whelan explained.

"None of this happens without people making the gift. And unfortunately, somebody's got to have something bad happen in order for us to do great things," he said. "Thank goodness someone signed their donor card and was willing to make the gift."

COVID-19-induced lung transplants are still so new that surgeon Barry Gibney, D.O., wasn't sure what he would find when he opened Ryan up. Descriptions from colleagues across the country were all over the place.

Ryan's lungs were an odd combination of the types of lungs he sees in cystic fibrosis patients and those of people with interstitial lung disease, an umbrella term that means scarring caused by disease or an environmental factor.

"It was very easy to see why his lungs weren't working," Gibney said.

Normal lungs should be soft and spongy. Ryan's were heavy and dense - more like a liver. And the blood vessels were clumped together and contracted, so small that they reminded Gibney of what he might see in a pediatric case.

Gibney thinks Ryan's is a somewhat unusual case in that few people survive for almost two months on ECMO. But lung transplants could become necessary for some people with long COVID-19, he said.

"I do think that we're going to start seeing the COVID long-haulers that are going to have end-stage lung disease as it relates to their coronavirus. I would imagine that it's going to be a new category of patients that we're going to be offering transplants to," he said.

All told, despite the logistical challenges of transferring Ryan from ECMO to a cardiopulmonary bypass machine for the actual surgery and the apprehension of not knowing how the surgery might unfold, Ryan's transplant went remarkably well.

The team had anticipated keeping him on ECMO after the surgery to let his heart rest, but Ryan "flew off" the cardiopulmonary bypass machine, Gibney said.

"The most remarkable thing, to me, has been his positive attitude through the entire thing," Gibney said. "He's been extremely motivated. He has done everything we've asked him to do, and on top of that, our physical therapy staff has been really working hard with him."

"This is less a story of COVID and lungs; this is more a story of motivation and teamwork," Gibney continued. "He wouldn't have done what he did if he didn't have the attitude and if the physical therapy team wasn't committed to him recovering."

Many of those who had worked with Ryan and Melissa gathered last week for the traditional bell-ringing ceremony in honor of the organ donor.

Many more couldn't be there: the team at Tuomey, who kept him going until he could be transferred; his and Melissa's shared workplace family, who held fundraisers and let Melissa remain in Charleston at Ryan's side; and all his friends and family watching his progress from afar via updates from Melissa.

Ryan is eager to get back to work building firetrucks at Fire Equipment Sales and Service, not to mention lifting weights and a new woodworking hobby, though it will be some time before he can tackle any of those activities. He's also become interested in painting, after a session with the art therapy team.

In the meantime, being "home" with Melissa, in a temporary apartment near MUSC Health so he can complete post-surgical rehab, is a welcome first step toward normalcy.

"I'm just glad I got a chance to keep going on," he said.