Their lives changed, COVID long-haulers find ‘family’ in support group

Willie Collier’s voice is gravelly from the tube in his throat, although he said he “wasn’t much of a singer” even before he caught COVID.

Collier, of North Haven, went to the hospital with a COVID infection on March 30, 2020. He was in a coma for two months. He was intubated and had a tracheostomy tube, often referred to as a “trach”, inserted.

The tube is still there, more than two years later.

The problem, he said, is the scar tissue that developed in his trachea during his intubation. He had given up hope of ever having it removed. Her doctor suggested a specialist in New York, but Collier was tired of trying.

It was the members of his COVID support group who convinced him to give the specialist a chance.

“I saw several doctors and thought I was going to hear the same story. I said, ‘I’m not going to go through this again,'” he said. which you really should go check out. I said, ‘Why not?’

Now there’s a plan to remove the tube from Collier’s throat.

“They’re going to take a piece of my rib, and they’re going to use it and they’re going to open up my throat and put a stent in there so it can open up for a few weeks, so it can heal,” he said.

Collier was a member of the COVID support group when he was a patient at Gaylord Hospital. When the group went online after their release, they jumped at the chance to participate.

“I didn’t hesitate,” he said. “I thought it was a good thing to be among people who went through the same thing, some worse than me.”

The first of its kind

The Gaylord Hospital COVID Support Group started when the pandemic was new.

“It was very obvious when I treated the first patient who was post-COVID, who came off a ventilator and then was transferred here for rehab care at Gaylord, that there would be a big emotional part of this illness,” Sarah Carpenter said.

Carpenter is a physical therapist and she, along with fellow Gaylord Jim Russo, has been running the COVID support group ever since.

After starting the group, they began to see that patients with what is called “long COVID” had similar symptoms. Although the symptoms varied widely, there were some commonalities. This was before the “long COVID” was recognized as an issue.

“Once we started this group, we could really see what a problem it was,” Russo said. “Whether it’s brain fog or a continuous cough, fatigue, just general weakness, PTSD. The list is lengthened increasingly.”

The group, they said, deals with many issues. The group validates everyone’s experiences.

“There were people who couldn’t eat bananas afterwards. Like, they have a weird taste in their mouths when they eat bananas or eggs,” Russo said. “That’s why this band is so amazing because one person can talk about it and then another person can say, ‘I’m not going crazy. I live that too.

Another problem is the return to normal society. There are people in the group, like Collier, who have recovered from the most severe symptoms of COVID but who, a year or even years later, are having trouble climbing stairs.

Meanwhile, they see the world moving forward and they are expected to do the same.

“We’ve had people who quit their jobs because their bosses expected them to come back 100% and they’re just not there yet,” Carpenter said. “We’ve had people who have gone back to work and they’re struggling to do it, but they’re doing it because they need it for money or for other reasons.”

Members of the group also help each other deal with medical issues because, Carpenter said, “there are no COVID-19 doctors there.”

“At first, finding doctors who would really listen to these patients and believe their long-distance symptoms was a challenge,” she said. “Participants share doctors who help them with different difficulties, right down to getting an air purifier to help their breathing.”

She said members “find comfort” in not being alone, “in the fact that other people are dealing with these other little annoyances, like a cough in your throat that just won’t go away and how aggravating it can be for them.

10 to 30 percent

Dr. Jerrold Kaplan is an outpatient medical director at Gaylord Hospital. He also runs the hospital’s COVID rehab and recovery program, which he says started thanks to the support group.

“If we turn the clocks back to the start of COVID in 2020, at that time patients were coming into the hospital with severe COVID. They were hospitalized in acute care, many of them remained in intensive care for weeks or even months.

These patients, he said, were “very debilitated.” Their needs were both physical and psychological

“Like a lot of other rehab conditions, we thought they would be hospitalized, then go to outpatient therapy, and then things would get better,” he said. “Unfortunately, a certain portion of patients continue to have persistent symptoms.”

After the support group was created, by listening to the members, Kaplan and his colleagues began to notice patterns in the stories they were telling.

“Through the support group, we noticed that many symptoms were quite consistent among the patients,” he said. “Patients had issues with severe fatigue, thinking about mental processes, cognitive impairment, which we then started to call ‘brain fog’. They had rapid heartbeats with very little exercise, they had balance and coordination problems.

What is commonly referred to as “long COVID” is now an official diagnosis, post-acute SARS-CoV-2 infection (PASC). There’s no consensus on the exact proportion of COVID patients who will show symptoms long after the acute phase of illness, but Kaplan said best estimates range from 10 to 30 percent, though that could be a lot. much higher.

Some of Kaplan’s current patients caught COVID more than two years ago and continue to show symptoms associated with the virus.

“We are seeing patients with long-term symptoms, who were among the first patients to have severe COVID when the pandemic started in early 2020.” he said. “Some patients have long-term symptoms that affect their endurance. They have chronic fatigue-related issues. Some of them have ongoing thought process problems, cognitive problems associated with it, and some patients have fully recovered.

bedridden athlete

Kaplan said a long-term symptom he sees in patients are heart abnormalities.

After only “short bursts of exercise,” the patients’ heart rates reached 180. “Some of them were patients who were elite athletes before they got COVID,” he said.

Beacon Falls’ Glenn Stevens was an avid hiker before contracting COVID in November 2020. “To this day, I can’t climb stairs without getting out of breath,” he said.

His COVID case started with a “strange smell”, he said, although he was admitted to hospital soon after. After he was initially released, he got worse: “After 2 days, I started turning blue. My blood oxygen had dropped to 75.”

He was hospitalized for 16 days. He was unconscious or barely conscious for much of it, although he was able to attend his son’s wedding virtually. Stevens’ health never fully improved and his emotional state also deteriorated.

“It’s hard to talk about it. I couldn’t walk from my couch to my front door. My life had changed. I became depressed and upset,” he said. “I started to feel guilt and anxiety about what my family went through during those times when I was oblivious. I was an emotional wreck.

“It was emotionally devastating for me, and I didn’t know if it was going to get better,” he said.

Stevens credits Gaylord’s support group for helping him through the toughest times, in part because he realized he wasn’t alone.

“It was so hard to talk, but everyone listened. They all said, “We’re going through the same thing,” he said. “Nobody over there is judging you.”

“Something on My Mind”

Stevens hasn’t fully improved, although he said he was able to walk up to two miles these days, despite the scarring in his lungs. The damage, he was told, could be permanent.

“The group has been a tremendous support. It changed my attitude on how to fight this thing,” he said. “They accepted me into this group as if I was a member of the family.”

He has now become a support for the other members of the group, people who may feel hopeless, as he did years ago.

“Now I find myself encouraging new members to fight and not give up, and to push,” Stevens said.

He’s positive about the future, but Stevens said he and others in the band get frustrated when people who get vaccinations and better COVID treatments downplay the disease.

“The band will tell you that the people in the band are really upset,” he said. “People will tell you, ‘It’s okay.’ Well, they don’t understand because they weren’t lying in the hospital wondering if they were going to go home.

Collier, too, has a positive outlook on life these days. It springs from his wife’s plans to get a higher degree, his children’s successes in college and at work. But it hasn’t always been so positive.

“There were a lot of times when I was upset,” he said. “I asked God why. I was being punished, I felt.

When asked how he got through the darkest times, Collier said he was grateful for his family’s support, but he also noted that he was “a religious person.”

“It was God’s grace that got me to where I am now,” he said. “A lot of times we say our job isn’t done yet. I guess there’s something in my mind that motivated me that I wasn’t aware of.

Collier said he believed he was being tested and the test was not yet complete.

“We all have storms to weather because life is a test. I believe that was one of my trials,” he said. “Until I remove the trachea, my trial will not be over. Then this trial will be done.

Virginia S. Braud