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Unshakable symptoms: When vestiges of COVID-19 won't go away

Groton — Julie Sanders has been feeling pretty well the last few weeks — so well, in fact, that she thinks the feeling is going to last this time.

Almost a year after she contracted COVID-19, the 45-year-old Noank resident is feeling hopeful that the pain and physical damage the disease left in its wake finally have subsided for good. A nearly symptom-free stretch in June that turned out to be all too impermanent is ancient history.

For Sanders, it’s been a long haul, hence her status as a “long-hauler,” the term for COVID-19 survivors who suffer from all kinds of illnesses weeks and months after the disease has left their bodies. Once thought to be anomalies, their ranks are growing.

“It’s a fair amount of the people who get really sick and are in the hospital,” said Dr. Adam Niedelman, a Mystic cardiologist familiar with Sanders’ case. “Anywhere from 40% to 60% of those COVID-19 patients who are hospitalized still have symptoms 60 days after they’re released. Among mild cases, 20% to 40% have lingering symptoms.”

Dr. Dilpreet Kaur, a pulmonologist at Windham Hospital who has treated Sanders, said she sees about one patient a day who suffers from long-term effects of the coronavirus disease.

As she spoke about her experience, Sanders was preparing to travel to Hartford for yet another doctor’s appointment, this one in-person with a neuro-ophthalmologist treating a vision problem thought to be caused by the disease’s impact on Sanders’ brain and nervous system rather than her eyes. It’s one of the disease’s effects that has been the hardest to shake, Sanders said, and the one that concerns her the most.

She also has experienced short- and long-term memory loss — part of the “brain fog” that many long-haulers experience.

“If you live with nausea every day, that sucks, but if you get in your car, drive somewhere and don’t know how you got there, that’s scary,” she said. "I used to have what I considered a photographic memory."

Sanders first noticed COVID-19 symptoms in late February or early March 2020, self-quarantined and got a test March 19. Nine days later, she got the results — negative.

Nevertheless, Sanders, an active, healthy person before experiencing the symptoms, was convinced she had the disease because of the suddenness with which she’d been stricken with “everything that you can imagine — high fever, loss of the sense of smell, chills, headache.” By the time she got another test in late April, her symptoms were getting worse, not better. The second test came back negative, too.

For 45 consecutive days, she ran a fever between 101 and 102.5 degrees. Chronically fatigued, "my couch and I became one," she said.

“I was way beyond the time I should have been feeling better,” Sanders said. “My doctor ran every blood test you can think of — for Lyme disease, sepsis, cancer. It became clear I fell into a different category.”

By winter, after multiple emergency room visits due to breathing problems, Sanders had scored a referral to Hartford HealthCare’s then-fledgling COVID Recovery Center, which is focused on a multidisciplinary approach to the long-hauler phenomenon. Dr. Vishal Kochar, in Plainville, consulted with Sanders via Zoom, discussed what she was experiencing “from my head to my toes” and directed her to an array of specialists.

In addition to an internist, a pulmonologist, a cardiologist and a neuro-ophthalmologist, the lineup included a neuropsychologist and a gastroenterologist, among others.

'A constellation of symptoms'

Though COVID-19 is primarily a pulmonary disease, it affects organs other than the lungs. Long-haulers typically report “a constellation of symptoms” that may include chest pains or irregular heartbeats that may or may not reveal a heart problem, according to Niedelman, the Mystic cardiologist. Only in the most extreme cases is inflammation of the heart muscle detected.

Kaur, the Windham Hospital pulmonologist, said many of the COVID-19 survivors she sees suffer shortness of breath and a cough, but few have heart problems. Some have scarring on the lungs while others with clear X-rays experience the same shortness of breath. It’s her opinion that inflammation caused by the virus, which triggers an immune response, can account for a fever that lasts 45 days.

She said she believes that long-haulers may be exhibiting symptoms of an underlying condition, such as asthma. But on the other hand, long-haulers who have no underlying conditions get symptoms, too, she said.

It’s not yet known whether any of the lingering symptoms long-haulers experience will become permanent.

In May, Mt. Sinai Hospital opened the country’s first post-COVID 19 care facility in New York City. In December, Rush University Medical Center in Chicago, in partnership with Yale New Haven Health and others, launched a study of long-haulers and their plight. Funded by the U.S. Centers for Disease Control and Prevention, the two-year effort to assess COVID-19's long-term effects is tracking 3,600 people with new COVID-19 symptoms and 1,200 people without the disease.

In the meantime, Sanders is off the couch and eager to get the COVID-19 vaccine. After what she’s been through, she said the possibility of its having side effects is of little or no concern.

b.hallenbeck@theday.com

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