After Covid destroyed his lungs, Skaneateles man can breathe again: ‘He’s several miracles’

Scott and Bethany DeWolf photographed at home in Skaneateles, N.Y.

Scott and Bethany DeWolf at home in Skaneateles. Scott got Covid-19 last November and received a double lung transplant in Florida. He’s doing well now and urging everyone to get the vaccine. Katrina Tulloch | ktulloch@syracuse.co­m

SKANEATELES, NY ― Scott DeWolf, a father of two and corrections officer at Auburn state prison, came home from work one day in November 2020 feeling lousy. When he woke up the next morning, he had lost his sense of taste and smell.

The 52-year-old Skaneateles man suspected Covid-19, figuring he may have been exposed at the prison. He wasn’t too worried. He was healthy and strong, and had no underlying conditions.

He tested positive for Covid, and after feeling worse drove himself to Upstate University Hospital. He figured he might need an IV and an overnight stay, then back home.

DeWolf was wrong. He would spend the next five months in a hospital bed. Several times, doctors would call DeWolf’s wife, Bethany, and tell her there was nothing more they could do for her husband. His lungs were irrevocably damaged by the virus, they said.

One day, his heart stopped. His doctors happened to be in his hospital room at the time and were able to revive him. It was touch and go, but his wife, Bethany, refused to give up. She found a hospital performing lung transplants for Covid patients and got Scott on the list.

Today, Scott is home, recovering from a double-lung transplant. He’s weak, tires easily and sometimes has “brain fog,” but he’s alive.

“I’m blessed to be here,’’ he said in an interview with Syracuse.com | The Post Standard.

His wife, Bethany, said, “He’s not one miracle. He’s several miracles.’'

Double-lung transplants are on the rise for severe Covid-19 sufferers, although they are a last resort. The first double-lung transplant in a Covid case was in June 2020. A total of 134 lung transplants have been reported in the United States for patients with Covid through May 21, according to the United Network for Organ Sharing, which manages the transplant system.

Scott was the 13th patient at UF Health Shands Hospital in Gainesville, Fla., to get a double-lung transplant., according to Dr. Sravanthi Nandavaram, who specializes as a transplant pulmonologist and an ECMO and critical care physician. The hospital has performed about two dozen Covid-related double-lung transplants, along with two transplants involving the lungs and kidneys.

Covid causes inflammation and scarring in the lungs, said Nandavaram, who cared for Scott before and after his transplant at Shands. That scarring can cause irreversible damage, with lung transplants the only solution, she said.

Most transplants are in people aged 30 to 60, and the majority are men, she said. Scott has made amazing progress, she said.

Scott was a good candidate for the procedure in part because he was strong enough to withstand the surgery and his other organs weren’t affected, his doctor said. He also has a strong support system to help care for him after the surgery, she said.

With two new lungs from an unknown donor, Scott continues to undergo physical therapy twice a week. He walks at least a mile nearly every day, sometimes up to five miles. He takes about 20 medications every day, some of them four times a day.

Recently, DeWolf recorded himself for the Skaneateles school board meeting, thanking the community for their support during his ordeal. He also urged them to wear a mask and get the vaccine. If the vaccine were available last fall, he said, he might have avoided this perilous journey.

“I don’t want anyone or any family to have to through what we did,’’ he said.

How it started

Scott’s nightmare began Nov. 13, 2020. Feeling sick and worried it might be Covid, he spent the weekend in the basement of his Skaneateles home. His wife, Bethany and two children – Jenna, 15, and Jake, 12 – stayed away from him. Scott tested positive, as did Bethany a couple weeks later. She had minor symptoms.

Not so for Scott.

“Every day I kept getting worse,’’ he recalls. On Nov. 17, he drove himself to the hospital. He didn’t come home again until June.

He remembers little of those early days, not even the texts he sent to his wife when he was first admitted. He remembers doctors coming in and out, and a priest in his room. He recalls a doctor telling him he’d probably need a ventilator. He knew that was bad news.

“After that, it’s all fuzzy,’’ he said.

The day after Thanksgiving, doctors placed Scott on a ventilator. Bethany, a school psychologist in the Fayetteville-Manlius school district, was scared and frustrated because she couldn’t see him. On Dec. 16, she got a call from a doctor saying there was nothing more they could do for Scott. His lungs were severely scarred, and it didn’t look good.

“I wasn’t going to accept that,’’ she said. “I told them there had to be something more they could do.”

Christmas was horrible, Bethany said.

“I tried desperately to get in the hospital to see him, but they weren’t allowing any visitors,” she said. “But the nurses were wonderful. They played music and did Facetime, and he was so well-cared for.”

During this time, Bethany got to know Upstate University Hospital nurse Renata Huggler, who cared for him on the medical ICU floor for Covid patients. Many of her shifts were spent caring for Scott, and she felt a special bond with him and Bethany.

Huggler remembers Scott being intubated and recalls how critical he was.

“He was very, very sick,’’ she said.

Scott DeWolf

Scott DeWolf with Upstate University Hospital nurse Renata Huggler, who cared for him in the ICU during his sickest times.

Double lung-transplant

Desperate, Bethany said, she suggested a lung transplant to doctors after a friend saw a television show about it. At first, doctors discouraged her but soon reconsidered.

Bethany wanted him put on an ECMO (extracorpeal membrane oxygenation) machine, which takes over breathing for a patient by bypassing the lungs. But she was told there had to be an end game – a possible lung transplant – to do this.

“I was told ECMO could be a bridge to somewhere. It couldn’t be a bridge to nowhere,’’ she said.

She was given three days to find a program that would consider him for a lung transplant. She and her friends devised a spreadsheet, divided up the hospitals and began calling Duke, Northwestern and more. One was interested, but then rejected him.

An Upstate doctor had a connection with a former Upstate physician, Dr. Nandavaram, at University of Florida’s Shands Hospital. Nandavaram and her team accepted Scott on Dec. 30 for a lung transplant.

Bethany and her kids packed her suitcases and began waiting. On Jan. 14, she got the call that Scott was to fly out on a Mercy Flight. But as doctors prepared him to leave, Scott’s heart stopped. His doctors revived him, but it meant couldn’t go to Florida for 10 days, Huggler said.

Scott underwent a tracheotomy, which allowed him to come off the ventilator after a couple of weeks. Scott and Bethany watched the Super Bowl together, but Scott doesn’t remember any of it.

“It was two to three weeks before I even realized I was in Florida,’’ Scott said. “One day I read on a nurse’s nametag, and I saw palm trees out my window.”

Scott thought he’d only been unconscious for two weeks, when it was nearly three months. He’d lost 70 pounds, and he couldn’t move or talk or even unfurl his fingers. “Bethany would have to peel my hands open,’’ he remembers.

Because he was so weak after lying in a hospital bed for so long, Scott had to undergo grueling physical therapy before he could get the transplant. He had to walk on a treadmill and down the hall, dragging two nurses, a physical therapist, a couple IV poles, and the ECMO.

He started out just by standing Feb. 12. He was wiped out. The next day, he took a step. Within a few weeks, he was going several hundred feet. There were times he wanted to give up.

The worst part was the coughing. One day Scott coughed over and over for 12 hours.

The physical therapist knew Scott’s passions, so she got him to reel in plastic fish from a child’s fishing kit, hit a plastic golf ball and play catch with a football.

Medical staffers help Scott DeWolf rehabilitate and practice motor functions after his coma and double lung transplant

Medical staffers help Scott DeWolf rehabilitate and practice motor functions after his coma and double lung transplant.

Scott said he drew strength from the dozens of photos and cards of support that lined his hospital room wall – from friends, family, kids he’d coached in soccer and strangers.

Bethany arranged for him to see the kids outside his room.

“One of the first days I stood up, she had the kids out the window in the parking lot holding signs up. One read ‘We love you’ another said ‘Keep it up, you can do it.’ That really motivated me. I hadn’t seen them in four or five months,’’ he said.

Scott was listed as ready for a lung transplant on Feb. 19. They waited two months.

The surgery started at 6 p.m. March 27, and lasted until 3 a.m.

The recovery

In recovery, they got Scott standing right away. He noticed right away that he wasn’t coughing anymore.

He had to rebuild his strength. “But we had an army behind us fighting for us,’’ Scott said. “This whole community was behind us. And I had a lot to fight for.”

Scott was discharged from the hospital in April, but stayed in Florida for more care. On June 4, Scott and Bethany drove home.

Scott is applying for disability from work and striving to get some sense of normalcy back. He can’t mow his two acres of lawn ever again (too many unknown chemicals), has to avoid raw seafood and red meat, and can’t drink alcohol again. But Scott said these are small prices for his second shot at life.

His nurses at Upstate kept a journal for him, which he read. He then reached out to his primary nurse, Huggler, to see if they could meet. Scott and Bethany meet her for dinner at the Bluewater Grill in Skaneateles.

“It was wonderful,’’ Huggler recalls. “They gave me so much hope and showed me what faith and advocacy can do. He had such a good outcome that it keeps me going as I care for critical patients.”

The DeWolfs say they no longer mindlessly go about their daily routines.

“I see our life in such color and fullness today,’’ Bethany said.

Scott said he wants to pay it back by urging people to wear masks and get their shots.

“I’ve seen the really dark side of Covid,’’ Scott said. “So I wish everyone would get vaccinated. I’ve seen people go by my hospital room in body bags, and I’ve been close to it myself.

“I don’t want anyone to go through what we did.”

Elizabeth Doran covers education, suburban government and development, breaking news and more. Got a tip, comment or story idea? Contact her anytime at 315-470-3012 or email edoran@syracuse.com

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