When COVID lingers: The long road to recovery stretches on for many
Christopher Stephenson of Marlborough works on his rehabilitation at Gaylord Speciality Healthcare in Connecticut. (Courtesy of Gaylord Speciality Healthcare)
The health consequences of COVID-19 are most often illustrated with numbers like case counts, hospitalizations, and deaths. It’s better told by the people behind those numbers who are months or years beyond infection and still living with lingering pain, illness, fatigue, heart conditions, brain fog, anxiety, and depression.
They are people like Christopher Stephenson of Marlborough, who spent 63 days on a ventilator in Cheshire Medical Center’s ICU and another 30 in a Connecticut rehabilitation hospital. And Tara Reardon of Concord, who now manages a new heart condition. And the Rev. Heidi Heath of Exeter, who went from a 5K runner to someone on rheumatoid arthritis medication and hoping to run a mile by summer’s end.
“I think we’ve reached the new baseline for me,” Heath said. “It’s not what it was, and I don’t know that it will ever be.”
Reardon and Heath are among the estimated 10 percent to 50 percent of people infected with COVID-19 who will experience post-COVID or long-COVID, defined as symptoms that last more than 12 weeks past the acute illness. For others like Stephenson, who narrowly survive infection, the health challenges are immediate.
They can be older but also in their 20s and 30s. They were healthy before COVID-19. Some were vaccinated, others not, though there is inconclusive research on the vaccine’s ability to prevent long-term problems. The vaccine, however, does reduce chances of getting COVID-19 in the first place.
Physical, respiratory, and pulmonary therapy provides some relief, but there is so far no cure and uncertainty about outcomes.
A growing number of people are seeking help.
In its first few months, Dartmouth-Hitchcock’s Post-Acute COVID Syndrome Clinic, the only one of its kind in the state, had received 300 referrals. It recently hit 600.
“I think that early on we thought this clinic would just be around maybe a year,” said Christina Martin, a nurse practitioner and infectious disease specialist. “And then COVID just didn’t go away. And so now there’s a push to say we need to do more services because this isn’t going away. We’re not getting smaller. We’re getting bigger.”
An unknowable prognosis
Managing post-COVID is a physical challenge but also an emotional one.
Stephenson, 56, credits Cheshire Medical Center with saving his life during his two-month stay in the ICU. On top of his COVID-19 infection, Stephenson was diagnosed with leukemia and treated for virus complications, including a gallbladder infection, shingles, blood clots on his heart, and a collapsed lung.
“It was really touch and go for quite a while,” his wife, Karen, said. “Three different times I went in to say goodbye to him. It was just really traumatic.”
When he was discharged, it was by ambulance to Gaylord Speciality Healthcare in Connecticut. In videos from his rehabilitation sessions, Stephenson and the team celebrate when he can sit up in bed on his own.
The day before his discharge last week, Stephenson looked exhausted, spoke in a voice made hoarse by his tracheostomy, and was still trying to regain his ability to walk unaided and manipulate a fork and knife.
“I thought I was healthy as a horse. High energy. Go, go, go all the time,” Stephenson said at a press event. “Never in a million years would I think I’m having to learn to walk again, to eat again, dependent on everybody around me. I never would have imagined.”
With so little data about post-COVID-19 health impacts, Stephenson and his wife are aware his prognosis is unknowable.
“I can tell you that we’ve been mentally switching gears a lot,” he said. “You set some goals, and you’ve got to be realistic. It’s one step at a time. One foot in front of the other, and let’s just keep moving.”
Heath, 39, of Exeter, contracted COVID-19 two years ago but remains on rheumatoid arthritis medication for joint pain. Managing her new reality also includes connecting with others who are coping with post-COVID challenges locally and through an online support group managed by Body Politic.
“It (provides) a good word of encouragement when days are hard,” she said.
It’s been a year for Reardon, of Concord. Her initial flu-like symptoms passed after three weeks but the rapid heartbeat she developed did not, and she now must take medication to manage it.
“You know when you’re really nervous and you feel like your heart is kind of in your throat? That kind of anxiousness?” she said. “It feels a lot like that. And then it’s really exhausting.” So much so that by 1 p.m. she sometimes feels like she’s run a marathon.
Reardon is optimistic she’ll eventually come off the heart medication and regain her sense of smell to enjoy the lilacs outside her office window this year.
“Somehow this virus will leave or the effects will leave,” she said. “I’m super hopeful.”
Treatment starts before discharge for the sickest patients.
Lani Croteau, an in-patient physical therapist at Wentworth-Douglass Hospital, often begins with convincing them to try breathing exercises.
She said the effort it takes patients to sit up in bed or walk to the bathroom exacerbates their respiratory challenges enough to trigger a panic attack and hyperventilation. Croteau sees the same happen when they watch their oxygen levels fluctuate on a bedside monitor.
Slowly, they work their way to discharge.
“They often have a kind of ebb and flow,” Croteau said. “They get a little bit better and then they sometimes will regress, and then they’ll get better again, ideally. But it’s a very bumpy road of recovery.”
When Dartmouth-Hitchcock Health opened its post-COVID-19 clinic nearly nine months ago, there was no definitive treatment. The only therapy Martin could offer was validation to patients who’d been dismissed and disbelieved by other medical providers.
Now she can do more.
“We still don’t have definitive answers. We still don’t have definitive treatments,” Martin said. “But at the same time, I’m starting to learn what’s working for patients and what’s not.”
Patients whose extreme fatigue kept them from returning to work are improving with physical and occupational therapy. Dartmouth-Hitchcock’s singing workshop, started to help those with Parkinson’s, pulmonary disease, and other illnesses to manage breathing challenges, has helped COVID-19 patients do the same.
“For the majority of patients that early on, I thought, (were) never going to get off the couch and … get back to work are suddenly doing it,” Martin said. “Maybe not full time, maybe not to the job that they had before, but are getting back into the workforce. It’s a slow process, but they’re recovering.”
The 36-class pulmonary fitness program at Catholic Medical Center for non- and post-COVID-19 patients uses exercise to strengthen lung and breath capacity. The support patients give one another and the personal coaching from the team is therapeutic as well, said Lorna Marshall, the program’s supervisor.
“We tell them, ‘Right now this is your new normal. This doesn’t mean things are not going to improve,’” she said.
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