'We Are Looking For Answers': Treating The COVID Long Haulers
In early March, Vic Gara came down with severe muscle aches, headaches and a rising blood pressure, indicators of COVID-19 that weren’t well understood early on in the pandemic.
“Taking a shower, just the water hurt my body,” he said. “I couldn’t sleep. I slowly became hypoxic. I just couldn’t breathe.”
Eventually, he was admitted to Hartford Hospital, where he was quarantined immediately and separated from his wife, Laura.
“My wife was walking in from after parking the car, and I saw her from maybe 15, 20 feet away and I just barely raised my hand and said goodbye to her,” Gara recalled. “And I was there for a month.”
The 57-year-old was intubated and spent 11 days on a ventilator, which helped him breathe, before he regained consciousness. Like so many others who required intensive care, Gara was first transferred to a rehabilitation hospital for a short time before he could return to his home in West Granby.
He thought the worst was behind him. But by midsummer, Gara struggled with exhaustion, his headaches returned, he had poor balance and trouble speaking and “brain fog” had set in. Then he joined an online support group for COVID-19 survivors.
“Not until I was contacted did I find out, ‘Oh my god, there’s other people like me that are suffering almost identical situations,’” he said.
There is an untold number of COVID-19 survivors worldwide who struggle with long-term symptoms and complications from the virus. Scientists don’t yet know how common this occurs, but what they do know is symptoms can be both physical and mental in nature, and they can delay people from making a full recovery.
As the phenomenon becomes more well-known and researched, health organizations across Connecticut and the country are creating and expanding dedicated COVID-19 recovery programs to help survivors.
“We’re now seeing patients that have had some of those symptoms for eight, nine months,” said Dr. Jerry Kaplan, outpatient medical director at Gaylord Hospital in Wallingford. He runs the organization’s new COVID-19 recovery and rehabilitation program.
The hospital created an online support group over the summer for former COVID-19 rehab patients like Gara. Kaplan said that’s when patients came forward with a wide range of lingering health issues.
Gaylord opened its specialized outpatient program in early fall, and it provides COVID-19 survivors with occupational and physical therapies, nutrition education, psychological treatment and other services.
“Even if you can’t do everything you were doing before, we can get you to the highest possible functional level,” Kaplan said, “and that’s really what the program is designed to do.”
The program has picked up in the last several months as long-term complications from COVID-19 illness become more well-known.
“As we see more patients hospitalized with COVID now, we will continue to see the need for COVID recovery programs in the future,” Kaplan said.
The Post-COVID-19 Recovery Program at Yale Medicine opened several months ago as a Friday clinic with a small patient roster. Dr. Denyse Lutchmansingh said it has now expanded to three days a week as more patients and medical clinicians discover the program.
“I think early on, people would say, give it a couple of weeks and you should feel better,” she said. “And now we’re well past that give-it-a-couple-of-weeks period and people are still having symptoms.”
Lutchmansingh, a pulmonary and critical care physician who leads the Yale recovery program, said she and her colleagues initially expected that patients who had had moderate to severe COVID-19 illness, like Gara, would be the ones needing long-term recovery services the most.
That’s only been partly true.
“Patients who were classified as mild disease have also had persistent symptoms almost as severe as a patient who was hospitalized in an intensive care unit, and that has been quite eye-opening,” she said.
Lutchmansingh said the clinic is also seeing a surprisingly young population. She has patients in their 30s and 40s who were runners, athletically inclined, or generally in good health prior to getting a mild case of COVID-19 “who now struggle to walk up a flight of stairs.”
It’s some of these patients that Lutchmansingh has seen struggle the most mentally with their persistent symptoms.
“Because they expected to recover very quickly and move on,” she said.
Dr. Serena Spudich is the division chief of neurological infections and global neurology at Yale School of Medicine and leads a designated neuro-COVID clinic, which opened in October.
Her team collaborates with Lutchmansingh and other clinicians in the greater community to get referrals for COVID-19 survivors suffering with tingling and numbness, loss or impaired senses of smell, taste and hearing, headaches, cognitive impairment and other complications.
Many of these patients were never hospitalized or never required intensive care for COVID-19.
This is where more research can help make sense of the trends that health providers are seeing in their COVID-19 “long hauler” patients, Spudich said.
“I think it’s really important to try to understand why some people get these neurologic issues, and many people don’t seem to,” she said. “I know lots of people who’ve recovered from COVID who seem completely fine.”
Scientists are still trying to estimate exactly how many people in the world ever had COVID-19, including those who never got tested or people who got false negative results -- cases that have not been recorded.
Only then might health experts know how common or rare long-term complications are among survivors, Spudich said.
“I think it’s important to be aware of them, to understand them and of course provide treatment for them,” she said. “But I worry that it’s sort of a fire that can take off where all the social media, all the press attention will suddenly make a lot of people think, ‘Oh, I’m having post-COVID problems.’”
“What is really, really important is getting patients who are having symptoms to a provider who can really critically take care of them and try to understand clinically what’s happening with them.”
What patients often want to know is, when will their health get back to what it was prior to COVID-19? And health experts don’t yet have a good answer to that as scientists continue to follow survivors in their recovery.
“We always make it clear to the patients that we don’t have all the answers. We are looking for answers,” Lutchmansingh said. “We remain hopeful, we have seen patients improve and build back to baseline, but it is a long pathway and it is not necessarily an easy pathway.”
For Gara, he continues recovery treatment at Gaylord on an outpatient basis. He tries to get outside more and build up his endurance with walks. For the most part, he takes it one day at a time.
“I went into it with an open mind and trying to stay positive,” he said. “I learned how to be more positive and look for the good rather than the bad. It helps.”