The Recovered: Mainers tell their COVID-19 stories

Ron Trask spent 11 days on a ventilator and nearly died of COVID-19 at Northern Light Eastern Maine Medical Center in Bangor. The 69-year-old Corinth resident doesn’t remember much from his harrowing, 39-day stay.

Rehabilitation is slow and arduous, and he doesn’t know if he’ll ever feel the same as before he contracted COVID-19 in April.

“I had to learn to feed myself, walk again and sign my name again,” Trask said.

Ron Trask with his dog at his home in Corinth on Aug. 6. Trask tested positive for the coronavirus in April and spent 39 days in the hospital, 11 on a ventilator. Going outside with the dog was often a big motivator for Trask to get up and move around. He said he is still easily fatigued. Staff photo by Brianna Soukup

When her sickness from COVID-19 was at its peak, Alaina Tomlinson kept an oxygen monitor by her bedside. Most nights, she woke up in the darkness gasping for breath.

“I played what I called the ‘oxygen game’ at night,” said Tomlinson, 40, of Cumberland. “There was a lot of anxiety.”

Alaina Tomlinson holds the oxygenator she used while she was ill with COVID-19 at her home in Cumberland. Tomlinson tested positive for COVID-19 at the beginning of June and was sick for weeks. She tested negative on June 24, but says she still feels some lingering aftereffects such as fatigue. Staff photo by Brianna Soukup

Tomlinson had 10 minutes to get her oxygen levels above 90 percent or she would have to go to the hospital. She would calm herself, take deep breaths and check the oxygen monitor. While she was never hospitalized, a few times she crossed the 90 percent threshold just in time to avoid a hospital trip.

Trask’s wife, Sue, wasn’t allowed to see him because of hospital visitation restrictions. So she sat by the phone for hours, waiting for updates.

“One time, I was told his kidneys were shutting down and he probably wouldn’t make it,” she said. “I was writing his obituary. In the back of your mind you always want to have hope, but in my heart I didn’t believe it. By the grace of God he came back.”

Since March 12, when the state confirmed its first case of COVID-19, more than 4,400 Mainers have contracted the disease. The virus has killed 132 of them, and nearly 3,900 have recovered. The Portland Press Herald/Maine Sunday Telegram interviewed five people who survived the ordeal and described the often-terrifying experience.

COVID-19 is a new disease that scientists are still learning about. The typical symptoms are shortness of breath, fever and coughing, and while the disease can be fairly mild for some, it can life-threatening for others. And even for people who are not in danger of dying, the complications can be long-lasting, extending perhaps for years, decades or even the rest of their lives.

Many of those categorized as “recovered” by the Maine Center for Disease Control and Prevention have endured months of lingering side-effects and complications.

Sara Paulsen said she has scarring in her lungs, and even months after she recovered from COVID-19, has difficulty breathing and chest pain.

Research shows some patients are suffering from long-term complications even after patients test negative. A July study published in the Lancet medical journal shows that out of 55 patients in China who were cleared of the virus, 35 were suffering from symptoms three months later. Of those, 14 had “lung abnormalities.”

Another troubling complication is continued heart problems after COVID-19 has cleared the body. A German study published in July in JAMA Cardiology found that 60 of 100 patients studied had myocardial inflammation after recovering from COVID-19, and 78 of 100 showed abnormalities in MRI scans of the heart post-COVID-19.

And according to a preliminary study published in July in the scholarly journal Brain, severe COVID-19 can lead to neurological complications, including inflammation disorders, called CNS inflammatory syndrome.

More common lingering complications include fatigue, headaches, joint pain and shortness of breath.

The aftereffects of COVID-19 have become so common that survivors with continuing symptoms are now called “long-haulers” in the national media. All five Mainers who recovered from COVID-19 and interviewed by the Press Herald/Sunday Telegram said they are still suffering from aftereffects of the disease.

Dr. Eric Haskell, a MaineHealth primary care doctor based in Cape Elizabeth, said he has treated dozens of COVID-19 patients, and it’s been difficult because the science is still developing on how best to treat the disease. So he keeps up on the latest research on what scientists are learning about how to treat COVID-19. There is not a course of treatment to clear the virus, like there is with taking antibiotics to clear a bacterial infection. They work to keep patients hydrated, reduce pain and fevers, and help with breathing, if needed.

“It’s challenging both as patients and providers, with the anxiety of the unknown,” Haskell said. “There isn’t a lot we can do. We do our best to support them.”

Haskell said much of what can be done is case management, such as helping people with alternative living arrangements, like a hotel room, if they can’t easily isolate themselves in their homes. Or they are treating conditions caused by COVID-19, such as heart inflammation.

“What is our endpoint? When do we stop the treatment? There isn’t a clear answer,” Haskell said.

COVID-19 has hit minority communities in Maine disproportionately hard, taking up about 27 percent of the total cases despite Maine’s minority population being only 5 percent statewide. There are a number of reasons minorities are more likely to be at risk, public health experts say. For instance, minorities are more likely to have jobs that don’t allow for working remotely, such as a home health aide. Or they have jobs where they work side by side with other employees, such as factory work, or interact a lot with the public. They are also more likely to live in multigenerational households, with more people in tighter quarters, making the virus more easily transmitted within a household.

Fatuma Hussein, founder of the Immigrant Resource Center of Maine nonprofit, said the pandemic is shining a spotlight on inequality.

“What COVID has done is tangibly unveiled the disproportionate and lack of equity in regards to communities of color,” Hussein said. “It has really shown that for a person of color, nothing is equal for you.”

Fatuma Hussein is the executive director of the Immigrant Resource Center of Maine. Staff photo by Derek Davis Buy this Photo

The virus directly affected Hussein’s Lewiston-based nonprofit, where three staff members were infected with COVID-19 at the same time, and one additional employee was exposed.

“By the time (the state) started talking about prevention and focusing on our communities, it was too late. COVID had already infected our communities,” Hussein said.

For her nonprofit, that meant the remaining employees had to scramble to provide services that were stacking up because of the other workers who were ill.

“I would go from hosting all meetings every day to providing direct services to people at night, whether that was going to Panera to pick up food for a family at night or picking up a load of food from BJ’s (Wholesale Club),” Hussein said.

RON TRASK

Ron Trask, 69, of Corinth said he thought he was getting a head cold in April, but within days his symptoms worsened.

Ron and Sue Trask outside their home in Corinth on Aug. 6. Ron Trask tested positive for the coronavirus in April and spent 39 days in the hospital, 11 on a ventilator. Sue, who was unable to visit him in the hospital, said she would drive by the hospital often. “I somehow felt closer to him, just driving by,” she said. Staff photo by Brianna Soukup

“I wasn’t getting any better, and I started having trouble breathing,” Trask said. He doesn’t know how he contracted COVID-19, but suspects spending time with friends inside a garage working on an antique car may have been how he was exposed.

He got a test, it came back positive, and within days he was in the hospital, where he would spend the next 39 days, 11 on a ventilator. Trask said he doesn’t remember much, but he does recall the isolation, with no family or friends allowed to visit.

Ron Trask outside of his home in Corinth on Aug. 6. Staff photo by Brianna Soukup

The hours went by with Trask lying alone in a hospital.

“You’re there all by yourself, and you don’t know what’s going on,” Trask said. “Even though the doctors and nurses are coming in with spacesuits on, you’re still glad to see them.”

Sue Trask, Ron’s wife, said since she couldn’t visit, she would drive by the hospital often. “I somehow felt closer to him, just driving by,” said Sue Trask, 59.

A retired truck driver, Trask said he is still weak and is having complications months after he left the hospital. “My short-term memory is shot,” Trask said. “I don’t have any strength or stamina anymore. I use a walker. The heat bothers me terrible.”

Trask said he is also having short-term memory problems, and sometimes has uncomfortable sensations in his lungs. Doctors told him they don’t know how long immunity lasts, so when he goes out now, he’s very careful.

Trask said he hates to see people not wearing masks, especially people near his age, a more vulnerable age group.

“It’s so sad to see people my own age think this virus isn’t anything to worry about,” Trask said. “Too bad a lot of the public thinks this is nothing. They really should take it serious.”

ALAINA TOMLINSON

Tomlinson, 40, of Cumberland, said it’s a “mystery” how she contracted COVID-19 in June, but she is still dealing with aftereffects months later.

Alaina Tomlinson tested positive for COVID-19 at the beginning of June and was sick for weeks. Staff photo by Brianna Soukup

“I had pretty much every symptom in the book, fever, nausea, coughing, chills, full body rash, shortness of breath,” Tomlinson said. “I had a lot of weird skin sensations, burning, tingling, hot and cold.”

She lost her sense of taste and smell, and she had a metallic taste in her mouth. She had a headache that lasted at least 20 days.

But Tomlinson said by far the scariest symptom was gasping for breath. She was evaluated at a Falmouth respiratory center set up by MaineHealth, and had to keep the oxygen monitor by her bed.

The shortness of breath made sleeping difficult.

“I was just absolutely exhausted, and yet I could not sleep,” Tomlinson said. “There’s a lot of worry and anxiety because you are not in control.”

Alaina Tomlinson says she still feels some lingering aftereffects, such as fatigue. Staff photo by Brianna Soukup

Doctors gave her breathing exercises to try to build up her lung capacity.

“I would take five deep breaths, hold the sixth deep breath for five seconds and then on the next exhale cough,” Tomlinson said. It took weeks, but her breathing eventually improved.

Tomlinson, a Sanford High School science teacher, said she’s still fatigued, and walking up and down stairs tires her now. Lingering symptoms include frequent headaches, joint pain and short-term memory loss. And she’s worried about school reopening, although she wants to teach some days in-person. Sanford approved a hybrid plan, so she is teaching in-person four days per week to limited class sizes.

“We don’t know what the long-term impacts of this disease are yet,” Tomlinson said. “That gives me pause. I’m worried about being reinfected because we don’t know how long immunity lasts.”

FOZIA ROBLEH

Fozia Robleh, 41, of Lewiston said she visited some friends inside their homes in early June, and that’s how she believes she was exposed to the coronavirus.

“I started coughing, and had a lot of headache,” Robleh said. “I told my daughter to stay away from me, this is not normal.”

She got tested soon thereafter, and was COVID-19 positive.

Robleh, an immigrant from Djibouti, said she had almost all the symptoms.

“I had headaches, body aches, lost smell and taste, out of breath, abnormal heart rate. I would get dizzy. I just didn’t have a fever,” Robleh said.

After two weeks, she still had headaches, neck pain and an abnormal heart rate. She was isolated in her own home, staying away from her 21-year-old daughter and 14-year-old son. Local immigrant groups helped her by delivering food to their door.

“I called the CDC, and they were telling me I was good to go (because more than two weeks had passed), but I was still feeling sick,” Robleh said. So she got tested again, and was still positive.

Robleh said her heartbeat became so irregular that in early July she spent a night at St. Mary’s Regional Medical Center in Lewiston for monitoring.

By late July, she started feeling better and a subsequent test on July 28 came back negative.

But Robleh said she is still not feeling 100 percent.

“I am feeling tired all the time,” Robleh said. “My heartbeat is still irregular, I cough easily and can’t sleep very well.”

WHITNEY PARRISH

Parrish, 33, of Hallowell, said in late April she started having a “deep, painful cough” and a fever.

She went to Mid-Coast Hospital in Brunswick, and because tests at that time were in short supply, she was not given a test. At that time, tests were prioritized for front-line health care workers, those living in congregate care centers and those already hospitalized.

Whitney Parrish outside of her home in Hallowell on Aug. 8. Parrish became ill in the spring with what doctors told her was the coronavirus. She has since recovered, but, like many other recovered patients, describes getting easily fatigued. Staff photo by Brianna Soukup

“They told me, ‘We are going to presume you have it, but go home and don’t be around anyone,’” said Parrish, an advocate who works in Bangor.

Parrish said her symptoms worsened.

“I was short of breath, just going upstairs made me out of breath, and I was sleeping all day,” Parrish said. Weeks passed, and she was getting worse.

Intense headaches began, and she started getting pains in her chest.

“I was like, ‘What am I supposed to do, this isn’t getting any better. I’m starting to get nervous,’” Parrish said.

Alarmed by the chest pains and an accelerated heart rate, Parrish said she went to MaineGeneral Medical Center in Augusta, where she underwent a battery of tests.

“They said, ‘We don’t really know what’s happening to you, but we want to make sure you’re OK. Every patient we see, this looks different,’” Parrish said.

The tests did not show any underlying health conditions, and after a few more weeks, she finally started feeling better. But Parrish said she still tires easily, is more headache-prone and has short-term memory problems.

“It was miserable for me, and yet I know it’s so much worse for other folks,” Parrish said.

SARA PAULSEN

Sara Paulsen, 37, said she probably became exposed to COVID-19 while giving many presentations at schools in March about teen mental health, in the final week before the pandemic forced schools to close.

Ten days later, she started feeling ill, with shortness of breath and a fever, and she tested positive for COVID-19. But the symptom that has persisted is feeling out of breath.

“I started having these dreams of suffocating or drowning,” Paulsen said. “It got to the point where I was wondering if I was going to be able to take my next breath.”

Doctors gave her medications and instructed her to frequently use a nebulizer, a machine that helps people – traditionally with asthma or COPD – with their breathing. But symptoms persisted and she also started getting pains in her chest. At Maine Medical Center, they gave her more tests, and discovered blood clots on her lungs, which is one of the COVID-19 complications in some patients.

Paulsen said she took blood thinners, and the clots cleared, but she’s still feeling weak and often out-of-breath.

“I have pretty severe scarring on my lungs from the virus,” said Paulsen, of Cumberland County. “It might not ever go away.”

Paulsen said she used to be physically active – biking and swimming – but now a walk around the block is exhausting. Paulsen said she doesn’t know if her health will ever return to before she got COVID-19. And she still wears a mask and socially distances, because it’s not known how long immunity lasts. It bothers her to see people not wearing masks and crowding next to each other.

“People really need to know this is not a hoax,” Paulsen said. “Please do not be any less careful. Please wear masks.”

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