The Middletown Press (Middletown, CT)
‘I will not get any (better)’
Fog of long COVID lingers for patients three years later
BETHEL — For the most part, Rob Stowell’s days working the cash register and unloading food from trucks at Trader Joe’s in Danbury are typical — with one exception.
All day long, every day, he coughs. He’s not sick — his cough is from having a severe case of COVID-19 in 2020, when he came close to death.
“My symptoms are not horrible but I do have some lasting lung issues,” he said, amid a bout of coughing. “I’ve still got some scar tissue in my lungs, which has not abated.”
Stowell, a former teacher who lives in Bethel, has long COVID, which is defined as COVID-19 symptoms lasting longer than one month, said Jerrold Kaplan, a physiatrist and medical director of outpatient and workers’ compensation services at Gaylord Specialty Healthcare in Wallingford. A physiatrist is a medical doctor who has completed training in the specialty field of physical medicine and rehabilitation.
Kaplan launched Gaylord’s outpatient COVID Recovery and Rehab Services in 2020 — a long COVID program that’s still going strong today, as the world marks the three year anniversary of March 11, 2020 — the day when the World Health Organization declared COVID-19 a global pandemic.
As of March 9, Connecticut has recorded 12,220 COVID-19 deaths, roughly equivalent to about one in every 300 people who lived in the state when the pandemic began. Though deaths have slowed at times, they have never stopped, and even today Connecticut continues to record dozens per week.
About 15 percent of adults in the state have experienced long COVID, according to the Centers
for Disease Control and Prevention, which states that “post-COVID conditions are a wide range of new, returning or ongoing health problems that people experience after being infected with the virus that causes COVID-19.”
Last month, the National Center for Health Statistics released data that says patients can recover from the acute phase of the infection but “still suffer from long-term effects ... (Long COVID) can cause a wide range of serious complications, including death.”
Kaplan said when he created the long COVID program, about 400 patients were in it with severe COVID. Many have since graduated or are no longer coming. Today, however, several 100 active patients are in the program, which teaches strategies for leading one’s best life with ongoing, perhaps permanent, COVID symptoms.
Strategies like this are important for long COVID patients like Stamford’s Maria Saumell, who was on a ventilator for more than six weeks at Stamford Hospital in spring 2020.
As a result of having COVID, she has neuropathy in her legs, arms, and feet and is often short of breath. Prior to getting COVID, she was a coordinator at Stamford Hospital but has since had to retire, due to her ongoing symptoms.
“I am 80 percent back. The doctor told me I will not get any (better),” said Saumell, who is 72, and like Stowell, also has a chronic cough.
Strategies
Through long COVID programs across the country and state, patients are learning to compensate for their symptoms so they can return to their pre-COVID lifestyle as much as possible.
“We look at their function and activities and quality of life,” Kaplan said. “Even though they may have lingering COVID, they learn how to manage it better so that they’re able to get back to a higher quality of life. They’re able to get back to work. They’re able to participate with their families. They’re able to do sports activities and go on vacations, even if they have to implement various strategies.”
Many patients with long COVID can’t tolerate a 45-minute to an hour workout, so instead, maybe they exercise for 15 minutes spread out three times throughout the day, he said.
Additionally, many long COVID patients who have cognitive difficulties, also known as brain fog, find it difficult to stimulate their brain with too many things at once.
“So, if you’re trying to work on the computer where there’s a lot of noise around ... you may not be able to do that. But if you’re focused and try to cut out a lot of the external stimuli such as doing one thing at a time instead of multiple things all hitting you at once, you should be able to (do that more easily),” he said.
Stowell said he’s learned strategies to live more comfortably from advice given at a long-term COVID program he participated in at Mount Sinai Hospital in Manhattan.
He said the program taught him “some pretty effective breathing exercises” to help his cough.
“One of the reasons why I cough so much is that my lungs are producing all this phlegm and the mechanism to remove it has been compromised by all the scar tissue,” said Stowell, a father of two.
To loosen the phlegm and sooth his cough, he said he “subsists” on throat lozenges, over-thecounter medication or “anything that will keep my my throat moist,” said Stowell, adding Trader Joe’s gives out lollipops and he goes through a bunch of them every day he’s at work.
After leaving Stamford Hospital, Saumell was treated at Gaylord Specialty Healthcare for six weeks, but didn’t participate in the long COVID program there. She gets weekly hand therapy at HSS Sports Rehab — Chelsea Piers in Stamford.
To help her COVID symptoms, her doctors tell her to go for walks — which helps both her lungs and her legs.
“I do get short of breath. I take my time (walking), just to get my balance,” said the grandmother of three. “I try to go three times a week. I’ll go down to (Scalzi) Park and just walk for about 45 minutes.”
Additionally, she works with therapy putty to help strengthen her hands.
“I squeeze it, roll it out, pinch it,” she said.
A need
Kaplan said Gaylord’s long COVID program was formed out of need due to all the critically-ill patients the hospital was treating at the beginning of the pandemic.
“Gaylord Hospital is ... a long-term acute care hospital. We take care of some of the sickest patients who ... required a longer stay at the hospital,” he said. “On the first wave of COVID, we saw very, very sick patients.”
Once many of those patients were well enough to be discharged, they still had issues and were diagnosed with long COVID.
“One of our physical therapists was following up with patients and formed a COVID support group,” Kaplan said. “It was through this support group that (patients) asked us to please put together an outpatient program. They were still having so many issues with COVID — with ongoing cognitive difficulties, physical difficulties, (and) difficulty getting back to work.”
Through the program, patients can receive multiple services at the same time; each specialist consults one another about the patient in a “collaborative” group,” Kaplan said.
Like Gaylord, the Yale School of Medicine in New Haven has a long COVID program, called the PostCOVID Recovery Program.
“Many patients are still struggling with a variety of long COVID symptoms — from severe fatigue to neurocognitive issues. At Yale School of Medicine, we’re leading research studies right now to find causes and treatments for them and better understand what will help them return to healthy lives,” said Akiko Iwasaki, director of the Center for Infection & Immunity at the Yale School of Medicine.
While Nuvance Health had a long COVID program, now patients with long-term COVID-19 symptoms are under the care of their specialists, and their care is coordinated by Nuvance’s primary care doctors, said Sarah Colomello, manager of public and community affairs at Nuvance Health.
‘I’m still here’
Saumell said while she often gets frustrated and even angry when her condition limits her ability to perform a task such as reaching into a cabinet, she said she thinks about everything she can still do in her life.
“I just thank the good Lord that I’m still here and can enjoy everything God gave me,” she said.
Stowell said he was told by his pulmonologist he’ll most likely never regain the remaining 10 to 20 percent of his pre-COVID lung capacity since the lower part of his lungs are scarred.
He has also lost muscle mass, has weakness in his legs and is about 30 pounds lighter than his pre-COVID-19 weight.
He said rather than focusing on the negatives, however, he’s grateful for what he has.
“Given where I was in November of 2020, I’m happy to be here,” Stowell said. “Having diminished lung function along with a persistent, chronic cough and muscle weakness is a relatively minor price to pay, especially considering the alternative.”