HARTFORD, Conn. — Of several hundred thousand Connecticut residents who have been or will be infected with COVID-19 during this winter’s omicron variant surge, most will avoid the worst-case scenarios of severe illness, intensive care and death.
But that doesn’t necessarily mean their experience with the disease will be over.
Experts say the recent wave of COVID-19 infections will almost certainly lead to a corresponding wave of “long COVID,” a phenomenon in which some patients who no longer have the disease continue to experience symptoms months or even years into the future.
No one knows the exact prevalence of long COVID, but one recent study found that that between 7% and 18% of people infected with COVID-19 experienced at least some long-term symptoms. Given the number of infections in Connecticut over the past two months, that could translate to tens of thousands of long-haul cases in the state.
“The outcomes associated with a [COVID-19] infection is not just two outcomes where you’re either fine or you die,” Dr. Denyse Lutchmansingh, who treats long-COVID patients at the Winchester Center for Lung Disease at Yale New Haven Hospital, said. “There are people who develop persistent, debilitating symptoms that affect their quality of life, even with a mild case.”
Sometime soon, COVID-19 transmission will slow in Connecticut and the state will try once again to move past the pandemic. For people with long COVID, though, it won’t be so simple.
“It’s not just like you get vaccinated and eventually the variants get weaker and we just go on with our lives,” said Kristina Unker, a Ridgefield resident still fighting symptoms a year after her COVID-19 infection. “What happens to the people who now have chronic illness?"
‘Desperate to feel better’
Before COVID-19, Berlin resident Kathy Spencer was a schoolteacher and long-distance motorcycle rider. She swam laps daily, worked out on her exercise bike and enjoyed tending to her garden.
Then came the virus. Within days of testing positive in November 2020, Spencer, then 56, found herself hospitalized with dangerously labored breathing. While doctors initially feared she wouldn’t survive, she responded well to antiviral medication and was eventually discharged.
For some patients, the story might have ended there. But Spencer’s symptoms continued, and she was soon hospitalized again with lung damage so severe that doctors said she would be eligible for a transplant.
Over the next year, Spencer says, she had 298 medical appointments in 365 days. She has been diagnosed with interstitial lung disease, chronic obstructive pulmonary disease, mild traumatic brain injury, post-traumatic stress disorder and dystonia, a disorder characterized by uncontrollable muscle contractions.
Today, she requires oxygen nearly 24 hours a day and labors to speak. Her kitchen table is jammed with medications. Instead of teaching full time, she tutors remotely about four hours a week. She can’t swim or ride her exercise bike for longer than half an hour. When she can muster the energy, she’ll take a 15-minute walk around her neighborhood, but that sometimes causes leg spasms that disrupt her sleep.
“My life is completely different now from how it was before I got sick,” she said.
Spencer’s story is extreme, but it’s not unique.
Unker had just celebrated her 40th birthday when she caught COVID-19 in January 2021. Despite exercising six days a week and having no preexisting conditions, she soon fell seriously ill, requiring multiple trips to the emergency room and a brief hospital stay. When she was discharged, it took her 10 weeks to be able to walk more than two blocks at a time.
Since then, she has faced a laundry list of symptoms.
“I’ve had everything from hair loss to severe chest pain, really hard time breathing,” she said. “In the beginning of my recovery I would get a package delivered to my apartment and bring it inside and open it, and that would knock me out. I’d have to lie down for hours to recover from it.”
A year later, having spent thousands in health care expenses, Unker still isn’t fully recovered. She has lesions and inflammation in her brain and has developed arthritis throughout her body.
Before her COVID-19 diagnosis, a typical day for Unker might involve a 7 a.m. alarm, a walk with her dog in the park, an intense workout, a full day at the New York-based design business she runs and an evening social gathering. Now, even a long phone call or a quick errand leaves her feeling weak.
Unker estimates that she works about half as much as she did before getting sick. Otherwise, she devotes much of her energy to the COVID-19 Longhauler Advocacy Project, which has lobbied the federal government for resources for people suffering long-term symptoms.
“There are millions of people like me who can’t work or can’t afford to pay or can’t get the people they need,” she said. “We’re a community of people who are desperate to feel better.”
Lots of questions, few answers
Even two years into the pandemic, researchers remain uncertain about key aspects of long COVID, including how often it occurs, who is most vulnerable to it and how best to treat it. Even the condition’s precise definition is murky, with different sources classifying it differently.
Lutchmansingh said the Winchester Center sees some patients with interstitial lung disease and airway diseases but that the most common issues — particularly among people who had milder initial COVID-19 cases — are shortness of breath and other respiratory symptoms.
Some patients, Lutchmansingh said, are older with serious underlying conditions. Others, though, are young or healthy, with no obvious risk factors.
“It’s not super clear to us yet as of this moment as to who is the type of patient who is going to develop post-COVID symptoms,” she said.
Some long COVID patients describe bad experiences with doctors who don’t know much about the condition or who don’t take their symptoms seriously. To that end, both Yale New Haven Health and Hartford HealthCare have established post-COVID recovery centers, staffed with people who specialize in long COVID symptoms.
Lutchmansingh says long COVID is difficult to treat because no two cases are exactly alike. It’s not yet clear, she said, whether post-COVID symptoms all stem from a single condition or whether different patients have entirely distinct pathologies.
“Really and truly, we’re learning as we go along,” she said.
Some patients, Lutchmansingh said, return over time to their pre-COVID selves, some improve while still suffering some symptoms, and others will deal with severe fallout indefinitely.
Spencer, the schoolteacher from Berlin, says her condition has slowly improved over time. On a good day, she will hook up her portable oxygen concentrator to the back of her motorcycle and ride for an hour, mostly within a small radius.
“I’m the type of person where if I don’t maintain an optimistic attitude, I absolutely will get worse,” Spencer said. “And I can’t afford that.”
In recent months, Spencer has tried to share her experience as widely as possible, in hopes it will bring attention to COVID-19′s potential long-term effects. She’s proud that her story has influenced several people in her life to get vaccinated when they were otherwise hesitant.
“I need to tell my story to as many people as possible,” she said, “so they can understand it’s not just, ‘Oh, I get sick a few weeks if I catch COVID. What’s the big deal?’”
