White Coat Black Art

Out of hospital, COVID-19 survivors must learn to breathe again

An innovative new after-care program oversees home oxygen support and other follow-up care for COVID-19 patients who leave the hospital with a long road to recovery still ahead.

New program provides remote support, oxygen monitoring for patients recovering at home

Akiva Balter with his wife, Carmela. Akiva was hospitalized with COVID-19 for two weeks. The COVIDCare@Home program provides support to patients and family caregivers to have home oxygen and other therapies in the patient's own home. (Dr. Brian Goldman/CBC)

When Akiva Balter was released from Toronto's Mount Sinai hospital in April after a two-week stay for a severe case of COVID-19, he hoped to resume his busy life — including 12-hour work days and numerous volunteer commitments at his synagogue — almost immediately. 

The 56-year-old quickly discovered that he needed to learn to breathe again, and that he'd require an oxygen tank to manage even basic tasks like walking across a room.

"I think I was worse than I would care to admit," the father of six told White Coat, Black Art host Dr. Brian Goldman.

During his stay at Mount Sinai, he'd been put on a machine called an AIRVO, which his wife Carmela Balter said she later learned was "one step before intubation." 

With his lungs still in need of healing, Akiva's discharge would be the beginning of two-and-a-half months of recovery at home. During that time he was a patient of COVIDCare@Home, an innovative after-care program launched in March 2020 that oversees home oxygen support and other follow-up care for COVID-19 patients who leave the hospital with a long road to recovery still ahead.

It's a model intensive care providers say places like Alberta may want to follow as it grapples with the disabling after-effects of its deadly fourth wave. 

Akiva with his at-home oxygen unit that his daughter nicknamed 'Roxy.' The father of six said he's mostly weaned himself off the oxygen therapy, but it's reassuring to have it in the house for now. (Dr. Brian Goldman/CBC)

Carmela said she believes that pre-pandemic, someone in Akiva's condition probably would have gone to a rehabilitation facility for the physiotherapy, respiratory therapy and other help he's now getting at home. 

Instead of being transferred to a rehab hospital, Akiva was supported remotely through COVIDCare@Home, which — though run out of Women's College Hospital — handles Mount Sinai's COVID after-care patients as well. Around 2,600 patients have been enrolled since the program began.

When discharged from the hospital, patients receive a guide that explains how to use their home oxygen, as well a pulse oximeter, a device that — slipped over a fingertip — monitors the oxygen levels in the patient's blood, said Shawna Kelly, a nurse practitioner with the program who helped oversee Akiva's care.

"We give them a log where they actually document their oxygen stats every couple of hours.... We call them to check in, whether it be once a day, twice a day, more than that, if needed,," she told Goldman.

Shawna Kelly, a nurse practitioner with Women's College Hospital's COVIDCare@home program, said patients are given a guide for managing their home oxygen and supported through calls at least daily. (Submitted by Shawna Kelly)

The team reviews those numbers and coaches patients on how to use the optimal amount of oxygen for their needs, said Kelly. In only a few cases has she called an ambulance for a patient whose blood oxygen level had dropped too low. 

Carmela said her husband had a scheduled call every morning at 10:30 with a nurse who would relay information to a doctor, who would call a few hours later to check-in and advise.

COVIDCare@Home also includes virtual sessions with a physical therapist, and, when needed, visits from a respiratory therapist.

The program has allowed the hospital to provide support for patients who leave the wards still needing oxygen but are otherwise able to manage without in-patient rehabilitation, "making more room for more patients to come into the hospital," said Kelly. 

Little talk of what comes after discharge

Although a lot of attention has been paid to how full hospitals and intensive care units have been during the pandemic, all parts of the health system —  including rehabilitation wards — run at close to capacity even in normal times, said Dr. Bram Rochwerg, site lead for the intensive care unit at Juravinski Hospital in Hamilton. 

"But we don't talk about … as those patients were improving and getting stable for discharge, whether, you know, the ... supports were in place for them," said Rochwerg, who is also a researcher and associate professor at McMaster University. Those supports could include occupational therapy, physical therapy, mental health counselors and space in inpatient rehabilitation wards.

The majority of patients experience a range of health problems that persist after discharge, known as post intensive care syndrome (PICS), he said. These may stem from the illness or injury that brought the patient to ICU, or the effects of treatment, including being on a ventilator or other treatments.

Carmela helps Akiva with his oximeter, used to measure the oxygen level of the blood. (Dr. Brian Goldman/CBC)

"We know that the muscle wasting from every day that you spend in the ICU on the ventilator and sick is hugely significant," he said. There are also mental health ramifications stemming from the trauma of being in ICU. 

"Now seeing this huge influx of critically ill patients, which we did see in the spring, certainly the downstream effects of having now a large number of survivors — of those who ended up in the ICU, 30 per cent died, but 70 per cent survived — and that 70 per cent that survived will experience components of PICS," said Rochwerg. 

He said the COVID-19 patients who survive the ICU likely "think that the war is won" when they get out of intensive care.

That was the case for Akiva Balter when he left the hospital. "You know, I felt like I was getting out of jail or coming back from war, which it was, right, it was a real battle," he said. He was welcomed "like a war hero" in an emotional reunion complete with a welcome sign out front and a reclining chair set up in the living room to keep him comfortable. 

Akiva's doctors estimated it would take him six months to be strong enough to golf again, but he succeeded in his goal of doing so sooner. (Dr. Brian Goldman/CBC)

But Rochwerg said what most of these patients don't realize is "the fact that probably the next three months, six months, nine months, is where the hardest work is going to lie, you know, in terms of getting back to the level of independence or functional independence that they had before they were sick with COVID-19. 

"Looking at what's going on in Alberta right now," he said. "There's going  to be a glut of survivors from this wave that are going to need resources."

While he still keeps the tank on hand for now just in case, Akiva is able to manage without oxygen today. Though he said it took longer than he expected, he's working again, leading classes over Zoom for his synagogue and, best of all, has returned to his favourite sport — golf. 

Akiva said being able to complete his recovery in the comfort of his home was invaluable, especially after being unable to see his family during his hospital stay. The remote monitoring also removed the strain of travelling to in-person follow-up appointments, and the safety concerns he had about sitting in those waiting rooms.

"There's nothing like being home," said Carmela. "Knowing that one could be home and still receive the fantastic care continuing from the hospital was priceless."

Written by Brandie Weikle. Produced by Amina Zafar, Jeff Goodes and Colleen Ross.