Supporting life after the ICU

When Ashley Comrie contracted COVID-19 in the early days of the global pandemic, it began a journey in critical care at University Health Network (UHN) in Toronto that continued long after she left the hospital.

She and her husband Kirk came down with the disease in late April 2020, and within a few days he rushed her to UHN’s Toronto General Hospital (TGH) suffering from a high fever and shortness of breath.

She was treated in a general COVID-19 ward, isolated from Kirk and the rest of her family and friends, which was the norm in the early days of the pandemic. Then on day four her oxygen levels suddenly plummeted, and she was transferred to the intensive care unit (ICU) with acute respiratory distress syndrome.

“I was scared, completely alone and in terrible pain,” she recalls. “I was coughing up blood, had fluid on my heart and I wasn’t able to catch my breath. It felt like I was drowning and choking at the same time.”

The care she received from the team of doctors, nurses, respiratory therapists, pharmacists and others “was incredible,” she says. “I genuinely felt that I was in the best place that I could have been. I’m alive because of them.”

As Canada’s No. 1 hospital and the No. 1 publicly funded hospital in the world, UHN is home to world-leading clinicians and researchers in critical care, including: Dr. Ewan Goligher, who works to improve mechanical ventilation; Dr. Eddy Fan, an expert in the use of extracorporeal membrane oxygenation (ECMO); and Dr. Margaret Herridge, a respirologist and critical care physician at TGH who focuses on bettering long-term outcomes for ICU patients and families.

Ashley could see that the hospital staff all around her were facing their own challenges amidst the global health crisis, including the fact that many of them were living separately from their families to avoid potentially transmitting the disease to them. Yet they helped her cope with worries about her own loved ones, especially her husband, who was also recovering from COVID-19.

“I cannot imagine in this time of chaos and uncertainty how they were able to come to work and show compassion for me and the people all around me,” says Ashley, who at 37, had coped with a number of health challenges, which included regular treatments for an autoimmune disorder. She and Kirk had also been trying for a decade to have a child.

Now her COVID-19 symptoms persisted, and new complications were arising. The inflammation of the nervous system associated with the disease caused a brain injury that weakened the left side of her body and left her unable to speak or walk properly.

She began rehab and in July 2020, after two negative COVID-19 tests, was finally able to go home. She was thrilled to be reunited with her family and friends but found herself in a challenging physical, mental and emotional state.

“I had to relearn everything,” remembers Ashley, who took 18 months off from her demanding job as a homelessness and housing social worker with the City of Toronto Housing Department while she focused on getting better. It was a long and frustrating process. “I went from working 16 hours a day to being unable to explain what I wanted for dinner.”

Dr. Herridge says the complexity of medical consequences after critical illness, such as Ashley’s, can make recovery challenging for patients and their families.

“We treat some of the most severely ill patients in Canada,” notes Dr. Herridge, who heads a clinical and research program at UHN, called RECOVER, that works to promote, maintain and improve long-term health outcomes for ICU patients and families.

Supported by private donations administered through UHN Foundation, as well as research grants from agencies such as the Canadian Institutes of Health Research, RECOVER is the longest continuously running post-ICU follow-up program in Canada.

Now run nationally through the Canadian Critical Care Trials Group, the program began at UHN in 1998 and expanded to focus on outcomes for patients and families after the severe acute respiratory syndrome, or SARS, outbreak.

Today, it provides a platform for a five-year national initiative headed by Drs. Herridge and Angela Cheung, called CANCOV, that is following over 2,000 people who had COVID-19, including ICU patients such as Ashley as well as hospitalized non-ICU patients and patients who convalesced in the community.

Such programs are about raising awareness and making innovative contributions to care, Dr. Herridge says. “We’re trying to advance knowledge about ICU outcomes, facilitate specialty and mental health care and emphasize the long-term care continuum over years after treatment for critical illness.”

Patients treated in the ICU may have different degrees of disability and mood disorders, says Dr. Herridge, who has authored and co-authored a number of academic papers on the issue.

Anxiety, depression and post-traumatic stress disorder (PTSD) are common. “We often see ICU patients who’ve been exposed to a lot of continuous sedation, narcotics and deep coma who have short-term memory loss. They also have problems organizing, something called executive dysfunction, which may be a barrier to returning to work.”

The program helps such patients get access to rehabilitation and mental health services, she says. “They’re high health care users.”

Families are also supported through CANCOV, says Dr. Herridge, who points out that caregivers experience an equally traumatic life event, which can compromise their physical and mental health.

The pandemic “was a time of extraordinary isolation and fearfulness” for patients and families, adding to their challenges now, she says.

Ashley has spoken with Dr. Herridge in follow-up clinic appointments “about how terrifying it was in hospital.”

“She kept saying to me, ‘I was convinced I was going to die there alone,’” she recalls.

For Ashley, these interactions with Dr. Herridge and the multidisciplinary UHN team were “instrumental” to her recovery.

She says she was “woefully unprepared” for how long it would take to feel better once released from hospital.

“I thought I would go back to work and be the same Ashley as I was before,” she says. “I was a completely different person. If I hadn’t had the aftercare with Dr. Herridge, who knew what had happened in the ICU and had been there, I don’t know where I would be today.”

Ashley was connected to a physiotherapist and a speech therapist, whom she continues to see. Most important have been regular check-ins where she has been able to ask questions about continuing symptoms, for instance, the fact that her hair slowly fell out.

Dr. Herridge was able to explain that hair loss is common after critical illness and reassured her it would grow in again, which it did.

Dr. Ewan Goligher (centre), an expert in mechanical ventilation, is part of the critical care team who treated Ashley at Toronto General Hospital.

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Ashley was also treated for kidney dysfunction, which included undergoing four surgeries for kidney stones, the first just two months after leaving the hospital. This brought on flashbacks to her time in ICU, so she was treated for PTSD and “we got it under control,” Ashley says.

Dr. Herridge greatly appreciates the support of RECOVER and long-term post ICU outcomes research from UHN. She hopes to bring more UHN foundation funding to her team’s efforts as the post ICU work extends to involve other specialities including oncology cardiac care and multi-organ transplantation. “We would welcome additional support, for sure.”

She wants to educate patients and their families about the trajectory of recovery after critical illness. “This is not a cold you get over in a week or 10 days, this is a total body insult, a major rehabilitation journey, and it’s going to take time.”

Her goal is for post-ICU, long-term follow-up care, currently modelled in the RECOVER and CANCOV programs, to become a standard, government funded care pathway.

Dr. Herridge says seeing patients such as Ashley thrive is gratifying. “Critical care is a stressful, difficult job. You take on the life catastrophe of a total stranger,” she says. “To see people get better and get through it, that’s a great privilege and sustains us.”

Ashley returned to work in late 2021 and she also got pregnant, then at six months she came down with COVID-19 for a second time. The UHN care team consulted with her obstetrics specialists to help her get through the illness. “They could have just stayed in their silos, they didn’t have to get involved but they did,” she says.

Despite all odds, in May 2022 she gave birth to her son Clayton, whom she calls “my little miracle baby.” She and Kirk credit Dr. Herridge and the UHN team for helping make his birth possible.

Ashley continues to have some trouble communicating and mixes up words. There are still tests to monitor her heart function and lung capacity, and check-ins where she’s able to mention areas where she needs support “and they make connections for me.”

Her advice to others who go through critical care is that “recovery is different than what you expect it to be. You’re alive and you’re grateful to be alive, but your whole life looks different.”

Getting help navigating through “your new health picture” is critical, cautions Ashley, who can’t imagine not having the care and the aftercare that UHN provided.

“I get to look at my life now, with my two-and-a-half-year-old and my husband, and say, ‘That’s because of that hospital,’” she says. “They saved my life in there and they helped me regain my life afterward.”

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