Michelle Berry does not remember much about being hospitalized with COVID-19 last fall.
The 43-year-old from Saco contracted the virus in September. A few days after testing positive, she awoke one night struggling to breathe. She was taken to Maine Medical Center in Portland, where oxygen and medications did not help her. She was put on a ventilator and into an induced coma for seven weeks, developing pneumonia and blood clots in her arms and legs.
At one point, doctors discussed an end-of-life plan with her family. Her husband, told to stay close in case things worsened, slept in their Jeep in the parking garage.
Then Berry did something that most patients on a ventilator for that long do not: woke up.
Her return home in November was only the beginning of her recovery. She struggles to lift one of her feet and has hand numbness. She loses her breath doing basic tasks. She lost so much hair that she decided to shave her head this month.
“When people think about COVID, they don’t understand the long-term effects sometimes that it can have,” Berry said. “For me it’s been a life-changing experience, and I’m one of the lucky ones that survived.”
Her experience highlights the potential for the virus to create both short- and long-term health problems that doctors are still trying to understand. Insurers are looking at how to accommodate workers long after their illnesses, sometimes deeming COVID-19 a catastrophic illness. Victims of “long COVID” struggle with frustration and fear facing chronic and uncertain conditions.
A staggering number of Mainers could be affected. The state has set records in the past month for new COVID-19 infections as well as new hospitalizations, with younger people less likely to be vaccinated accounting for a greater share of cases. While the vast majority of patients recover quickly, studies have shown between 10 and 30 percent of people who contract the virus have symptoms months later. Rates were higher among those who were hospitalized.
A study published in the journal Nature last month found the virus can persist throughout the entire body for months, potentially causing continued symptoms and long-term organ damage. Symptoms range from continued loss of taste or smell to brain fog. Side effects can be so limiting that the federal government has deemed long COVID a disability.
Tracy Morin, a 36-year-old retail worker from Arundel, generally only took a few sick days per year before getting COVID-19 last January. She has taken six weeks since then because of two flare-ups of a spiking heart rate, along with lightheadedness, weakness and migraines. She wears a baseball cap at all times and has sunglasses ready in case light sensitivity strikes. She is not as physically active as she used to because of fatigue and inflammation in her knees.
Morin has worked at the same company for 15 years and once took pride in her ability to get big projects done on the floor. Forty hours a week is now a struggle and she worries her condition will be permanent.
“It comes and goes in waves,” she said. “It’s like, ‘OK, I’m feeling well, feeling well, oh, now I’m feeling great, and then boom, I’m going downhill.’”
Insurance companies are struggling to forecast how long patients may need disability coverage because COVID-19 is new and changes quickly, said Sheila Weiss, associate vice president of group claims and clinical services at Sun Life, a national company with offices in Scarborough. Her company takes a case-by-case approach to illnesses and works with companies and employees on plans for people to get back to work within their means.
Sun Life evaluates how much symptoms might affect someone’s ability to do their job, Weiss said. Accommodations range from more scheduled breaks to working from home. The company offers an income-protection plan for people who must leave work for extended periods of time.
“What I can say from our experiences — consistent with the medical research and the scientific data — is that this is a real phenomenon,” she said. “Individuals generally are looking to recover and get back to work.”
Research into long-term COVID-19 complications goes on, including at Maine Medical Center. Studies published so far mostly predate the more contagious omicron variant. There also have been fewer completed studies on the prevalence of extended symptoms among vaccinated people, who continue to be less likely to contract the virus or be hospitalized.
Berry, a real estate agent, was not vaccinated when she contracted COVID-19. She did not oppose vaccines but had not made it a priority and had been advised a few weeks before she fell ill to put it off until after neck surgery. She has asthma, but no other serious conditions that should have put her at increased risk for severe COVID-19.
She wishes she got the shot in April when it was first available to Maine adults. She got it in December. Her oldest son, who had been hesitant, got vaccinated while she was in a coma. She now goes to physical therapy several times a week and recently regained the ability to drive. She is appreciating time with family while working to regain her health.
“Eighty percent [of people] that were in my situation do not survive, and leave children without parents and parents without children,” Berry said. “I wish that people would take it seriously and do their part.”
Correction: An earlier version of this article gave the wrong title for Sheila Weiss of the insurance company Sun Life.