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Off the ventilator but not yet on his feet: The long road to recovery from COVID-19

Doctors say there are still a lot of unknowns about COVID-19, the recovery period and what some of the long-term impacts may be. Researchers hoping to understand more about the disease are now beginning the task of trying to map out the spectrum of cases.

Doctors still trying to figure out what recovery looks like for different COVID-19 patients

Nigel Mayne, centre, pictured before he was hospitalized for COVID-19, with his daughter Shelley and four of his five grandchildren. He spent 27 days in hospital, including 16 days on a ventilator. (Submitted)

The last thing Nigel Mayne remembers before being intubated was asking the doctors if he could call his daughter Cassandra Muldoon, a medical resident at a hospital in Bangor, Maine.

"[She] answered her phone, and I said … 'I feel the tubes going down my neck. Am I going to die?'" said Mayne, speaking from his Mount Albert, Ont. home, pausing to recollect the details.

Not long after that call to his daughter, he went into an induced coma at South Lake Regional Health Centre in Newmarket, Ont. about 50 kilometres north of Toronto.

It would be 16 days before he would wake up and learn he had COVID-19.

Now home with his wife, it'll be weeks — even months — before Mayne is close to being back to normal.

Before the illness, he was a healthy 60-year-old who loved to travel for both business and pleasure. He left the hospital physically weaker, having suffered trauma from being in a coma for so long. He's since had to undergo a number of tests and even return to hospital two weeks after being discharged.

"There's a lot more to COVID if you get a … serious case of COVID. There's other things to deal with," he told CBC News.

While some of those symptoms are typical of a patient who has had a prolonged stay in an intensive care unit, doctors say there are still many unknowns about COVID-19.

A small subset of patients — like Mayne — are hospitalized, spend days or weeks in the ICU on a ventilator, and require intensive physical and mental therapy to recover. Others recover at home with milder symptoms. Researchers hoping to understand more about the novel coronavirus and the disease it causes are now beginning the difficult task of trying to map out the spectrum of cases.

WATCH: Nigel Mayne describes his long and difficult recovery from COVID-19

Nigel Mayne spent 27 days in hospital, including 16 days on a ventilator after contracting COVID-19. He’s now home with his wife, but it'll be weeks — even months — before Mayne is close to being back to normal. 2:34

In Mayne's case, it was six days after returning to Ontario from the U.K. that his symptoms started: coughing, fever and "ice-like" chills.

His wife, Nancy Mudford, took him to the emergency room at South Lake Health Centre on March 23, but because it was early in the pandemic, they didn't know the hospital had locked down. She brought him to the entrance but was told to wait outside.

Nigel Mayne pictured with his wife Nancy Mudford. Before testing positive for COVID-19, Mayne was a healthy 60-year-old who travelled for work and pleasure. (Submitted)

"I went outside and I'm like, 'I don't understand. What have you done with him?' And so I didn't even say goodbye," said Mudford.

Mayne would later call her as he was heading into the ICU, and that's when she learned he would be put on a ventilator. 

Mudford said one of the hardest parts was not being able to physically visit her husband for more than two weeks due to restrictions aimed at stopping the spread of the virus. She and Mayne's four daughters had to rely instead on updates from the nursing staff.

"They would hold the cellphone to his ear and we would talk to him. We were all conferenced in. We were hoping he could hear us, and basically say, 'Stay with us and keep fighting, OK?'" said Mudford.

Three of Nigel Mayne's four daughters: Jenna, left, Kim, centre, and Shelley at Kim's wedding. They couldn't physically visit or communicate with their father when he was in intensive care, and instead spoke to him through a phone that nurses held up to his ear. (Submitted)

Sixteen days after he was first taken to the ICU, Mayne's family received the welcome news that his condition was improving and he'd be taken off the ventilator. Twenty-seven days after first being admitted, he was allowed to return home.

Leaving the ICU

Leaving the hospital presented a new set of challenges for Mayne and his family. He had lost 25 pounds of mostly muscle mass, he could barely walk and his kidneys had started to fail when he was in his coma.

Mudford vividly remembers the day she drove him home.

"He was so weak. I put him in the car and we were both crying, and I was like, 'You're going to be ok, it's just going to take time.'" 

In the days that followed, Mudford and her family had to install things like a seat in the shower and bring a walker to him to ensure he wouldn't fall and injure himself.

Two weeks after he came home, Mayne had to go back to the hospital to be treated for a blood clot in his leg. He's now on blood thinners and continues to have regular visits from nurses and checkups with an occupational therapist, physiotherapist, a dietitian and his family doctor. 

Recovery and the unknowns

Mayne's case is by no means unique, but COVID-19 affects different people in different ways — some are able to recover at home, others require hospitalization. According to Dr. David Frost, a small subset of patients with COVID-19 are admitted to hospital, and an even smaller subset end up in the ICU like Mayne.

"There are complications of long ICU stays that are not unique to the COVID-19 population by any means. Weakness, mood issues, delirium we're seeing that as you might expect," said Frost, site director for the division of general internal medicine at Toronto Western Hospital.

But what doctors don't have a clear idea of, said Frost, is the potential long-term effects.

"We have yet to see, I think, the full effect on patients. That will take months and years to develop enough knowledge of what exactly happens."

Dr. Angela Cheung, a staff general internist and senior scientist with the University Health Network in Toronto, is part of a team of clinicians digging deeper into the long-term effects of COVID-19. She worked on a similar project following the SARS outbreak in  the early 2000s.

Dr. David Frost at Toronto Western Hospital says COVID-19 patients can experience a range of symptoms and recovery times and we're still learning more about the effects it has on the body long-term. (David Frost)

They're speaking to patients — both those who are hospitalized and those who are recovering at home — dealing with effects that range from a loss of smell or taste to serious fatigue.

"Our group of scientists are really trying to systematically and comprehensively study these patients," said Cheung.

"We know some of the sickest patients have a long road to recovery."

The road ahead

Mayne's daughter, Dr. Cassandra Muldoon, estimates that it'll take her father two to six months before he'll be able to run and eat the way he used to.

"There's a lot of focus in the media on the respiratory symptoms and being able to breathe again and that's a big one," said Muldoon.

"The bigger things are the lifestyle ramifications. What have you lost? You've lost time, you've lost physical ability, you've lost cardiovascular ability, you've lost life. And it takes a lot of time to come back to those things."

Part of what Mayne is still struggling with is the psychological trauma.

Nigel Mayne, pictured with his daughter Dr. Cassandra Muldoon, who is a medical resident in Bangor, Maine. She was in regular contact with doctors throughout his hospital stay to help keep the family informed. (Submitted)

"I'm now being lined up to see a psychiatrist to talk about some of my emotions because I have my moments and a few flashbacks," he said.

Mayne said he's hoping sharing his story will persuade people to take physical distancing measures seriously and to wear masks and gloves to prevent the spread.

"I just want people to take the necessary precautions. I want to hug my children, my grandchildren just as much as anybody else. But it's too early … And I certainly wouldn't want to see anybody else go through [what I did]," said Mayne.

Nigel Mayne continues his recovery at home. Medical professionals have told him it takes one week of recovery for every day spent in the ICU. He was there for 16 days. (Submitted)

At the same time Mayne was in the ICU, his younger brother in the U.K. was hospitalized for COVID-19 and put on a ventilator. He died while Mayne was in his coma.

"I'm still very blessed and very fortunate. I'm here: I'm the right side of the dirt. A lot of people aren't so fortunate."

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