Vermonters with ‘long COVID’ seek answers

  • Kathy Warren sits on her porch in Montpelier. Warren spent six months at home this year while her COVID-19 symptoms lingered. Doctors don’t know why some patients suffer for months when most recover in days. vtdigger — Mike Dougherty

  • Kathy Warren kept a running list of the various Covid symptoms she experienced in the months after contracting the virus. VtDigger — Mike Dougherty

Published: 11/18/2020 9:49:47 PM
Modified: 11/18/2020 9:49:38 PM

After Kathy Warren battled COVID-19 for more than three weeks in March, her fever dissipated and she was able to walk down the street in Montpelier without needing to rest. She thought she had beaten the virus.

But in May, Warren, who’s 57, was hit with another wave of illness, including a sore throat and fever. She was so tired she’d take a nap just after breakfast. And then again in the afternoon after doing a few household chores.

She struggled to breathe, and in July a doctor told her that she had coughed so hard that her stomach had moved into her esophagus. When she lay down, 80% of her stomach was in her throat.

“Most of all, it just made it hard to breathe,” she said.

Her body felt irreparably weak. She subsisted on chicken soup. “I was worried that I might not ever be strong again,” she said.

There is not yet a formal diagnosis for what Warren was experiencing, but she’s not alone. She’s one of a growing number of COVID-19 long-haulers, who are suffering from the effects of coronavirus months after an initial recovery. The condition, also known as “long COVID,” can lead to a panoply of bewildering symptoms: hair loss, memory loss, red spots on the legs, an autoimmune response, lack of smell or taste, brain fog, exhaustion, cough, insomnia, diarrhea, fever.

Because of the many ways the syndrome can affect the body, “we just haven’t been able to pinpoint a specific reason for them still having symptoms,” said Dr. Katherine Menson, a pulmonologist and critical care doctor at UVM Medical Center who has been treating about 20 patients with long COVID.

A growing body of research suggests that between 2% and 10% of COVID-19 survivors will experience long-term symptoms.

Some of those symptoms are a result of the body’s inflammatory response, said Rep. Mari Cordes, P/D-Lincoln, who also works as a nurse at UVM Medical Center. In other cases, patients with long-haulers syndrome are battling increased blood clotting, which can cause a heart attack if a clot blocks blood flow to the heart. In the latter situation, “they may have medical management of heart failure for the rest of their lives,” Cordes said.

Long-lasting impacts from COVID-19 will likely have significant health implications for individual Vermonters and for the population as a whole, Health Commissioner Mark Levine said. There’s a “silent pool of people that are out there, and that we will start hearing from or hearing about and need to be kind of educated on,” he said.

Menson and a UVM colleague, Dr. David Kaminsky, have received grant funding to track 80 COVID-19 survivors over an 18-month period, measuring oxygen levels and testing their lung functioning.

Officials at the Vermont Department of Health have also started discussions about conducting a survey for Vermonters who have recovered from COVID-19 to gauge how many have ongoing health effects, Levine said.

The health department hasn’t been able to track a definitive number of long haul cases because many people who have lingering symptoms don’t realize they’re related to COVID-19 or haven’t discussed them with their doctor. If 10% of the state’s COVID-19 survivors, or about 300 people, are affected long-term, that number “would be huge,” Levine said. “So we need to be really thoughtful about this and understand it better and be able to be supportive.”

More research will help doctors to treat the symptoms and to create policies around sick leave, disability, insurance or vacation time that may help support those who need it, he said. It will also inform the Legislature on how to work to provide adequate health care or other policies, Cordes said.

In the absence of clear treatment options, Menson said she’s been focusing on “supportive care,” offering rehab, and making sure that none of the complications are overlooked. She’s started a support group, which helps her learn how to provide care as well as support patients.

The group has met once so far, and has discussed how to cope with stress and deal with common symptoms like brain fog and insomnia. It’s “really identifying the needs they feel that they need met,” Menson said.

Bad smells, memory lapses

Without scientific consensus, COVID-19 long-haulers say their connections provide assurance that they’re not alone in their mystifying and inexplicable symptoms.

Nicole Racicot, who worked as a teacher in Bethel, spent weeks trying to identify the source of a rotten smell she kept noticing at home. She looked into her closets and threw out old food in her fridge.

It was only after she joined a Facebook group for COVID-19 long-haulers that she realized that she had been smelling a phantom odor. Food, at the same time, smelled repulsive.

Racicot had fallen ill in March and had three weeks of flu symptoms. Afterward, she went back to her job as a special educator, but found that her memory was foggy. She forgot Spanish words she once knew and she stopped using her debit card after she held up the line at the grocery store because couldn’t remember her PIN number.

She has started obsessively making lists. “It’s manageable,” she said, of the memory lapses. But “it’s embarrassing.”

Her hair fell out in clumps, and angry raised spots sprang up on her legs and lower back.

She’s been taking iron and vitamins but hasn’t scheduled an appointment with a doctor. “I’ve just been waiting it out,” she said.

Suzanne Garrity, a Burlington account executive, decided not to seek medical care either, even though she felt tired for months after her bout with the virus in March. She lost her sense of smell for three months, and food became unappetizing. She lost weight. “Eating is not joyful when you can’t smell,” she said.

Warren, the Montpelier resident, had surgery to move her stomach from her esophagus. She sought care with an alternative medicine doctor, who prescribed B12 injections and an array of vitamins to correct deficiencies. Her first day back at work as a nanny was Oct. 5.

She still tires easily and occasionally notices an inexplicable burning sensation in her mouth. The sense of uncertainty persists, too. It’s unclear whether the effects are long-term, or whether the virus can become reactivated, similar to the way the chicken pox virus can return as shingles, she said.

“It’s sort of humbling, right, our lack of control,” Warren said.

According to Menson, COVID-19 history will be a factor that doctors should consider when they diagnose other illnesses down the road. The Vermont Department of Health, in conjunction with the Larner School of Medicine’s Division for Infectious Disease, has started studying another mystifying group of COVID-19 survivors — those who don’t feel sick, but who test positive for COVID-19 multiple times, sometimes weeks or months after their illness, Levine said.

That population may have recovered from COVID-19, but still have fragments of the virus in their system that a very accurate test will pick up. In that case, it’s an inconvenience. But a positive test result in a place like a nursing home can lead to a frenzy of response in isolating a patient and contact tracing, he said.

Part of the issue is messaging, said Levine. Long COVID-19 represents a major shift in how a coronavirus infection was originally understood and publicized; early on, health officials said 80% of people recover and “do great” and 20% will be hospitalized or die.

Now, “ ‘great’ is in quotation marks,” he said. “Because for some of those who did great, yeah, they didn’t get hospitalized; yeah, they didn’t die — but something is not right.”

The reality is “they might not have such a rosy future and we should get a handle on that,” Levine said.

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