20 July 2023
Even as the city’s top doctor shared optimism about the state of the pandemic, Northwestern Medicine clinicians warned the public to be wary of the disease’s lingering effects.
The directors of the hospital system’s Comprehensive COVID-19 Center released a study Thursday on “long COVID” symptoms. It showed thousands of patients have suffered from a wide array of serious medical issues that highlight the illness’s lasting harm and the importance of a treating long COVID with a multidisciplinary approach, they said.
Tuesday marked two months since the federal and state governments’ pandemic public health emergency was declared over, Chicago Department of Public Health director Dr. Allison Arwady noted in a livestream earlier in the week.
“And we continue to do very well,” she said.
The city is seeing just over three COVID-19 patients admitted to hospitals each day, Arwady said.
“So, not over,” she said. “But that is down. It continues, really week after week. We are breaking records for the lowest number of hospitalizations.”
Both Illinois and Chicago are below the similarly declining national average in hospital admissions, Arwady said. The percentages of Chicago hospital beds and emergency room visits being used to treat COVID-19 patients are also at or near their lowest levels, she added.
The city is now seeing below one death per day, another pandemic low, she said. Over 8,000 Chicagoans have died from COVID-19, city data shows.
“We are at the lowest levels of COVID that we have seen here in Chicago. So your risk is the lowest that it has been,” Arwady said. “But … it’s not zero.”
However, even as hospital admissions go down, the leaders of Northwestern Medicine’s Comprehensive COVID-19 Center said their practice is expanding.
“We are actually ramping up, because nowadays, even if it’s not filling up hospitals with sick patients with pneumonia, COVID-19 is still affecting thousands of people,” said Dr. Igor Koralnik, the center’s co-director.
The study the center released analyzing the long COVID treatment of over 1,800 patients across eight years reported a mix of medical issues, including lasting brain fog, shortness of breath and chest pain.
Over half the patients the Northwestern center treated showed cognitive impairment. Nearly half had altered lung function. An elevated heart rate was detected in 12% of patients, while 83% had abnormal chest scans and 85% reported a decreased quality of life, the study showed.
Long COVID affects approximately one third of people who survive COVID-19, according to Northwestern Medicine.
Center co-director Dr. Marc Sala said he doesn’t think the public and policymakers are paying enough attention to long COVID. Interest in the disease’s lingering effects has faded amid the declared “end” of the pandemic, he said.
“You will have many patients come to us still in good numbers to fill up our clinics,” Sala said, “with symptoms that are enough to be disabling to their lives as previously known.”
People might only develop long COVID on their third or fourth time contracting the virus, he said. They might even not need to go to the hospital when they initially contract the disease, but develop the troubling lingering issues later, he noted.
The long COVID patients the center sees had diverse experiences with COVID-19 when they were initially ill, Sala said. Some were hospitalized and intubated, while others never even tested positive, he said. Now, they exhibit a broad mix of unique symptoms, he added.
“There is not a one-size-fits-all long COVID,” Sala said.
The unique challenges the patients face means medical systems need to respond to long COVID with clinics where multiple clinicians from different specialties are working together to quickly evaluate and care for patients, Sala said. The Northwestern clinic offers 13 different specialties, he added.
One Northwestern patient, Giancarlo Jusino Sánchez, contacted COVID-19 for the first time in June 2022 after being careful to avoid the illness for years.
“It was incredibly mild. The mildest COVID you could imagine,” Jusino Sánchez told the Tribune.
The 30-year-old was back to normal life two weeks later. But when he tried a high-intensity workout, he noticed his quads were killing him. Later, he could barely walk up the stairs. Things got progressively worse.
As he worked, the Northwestern doctoral student, who’s studying particle physics, noticed it was very difficult to concentrate.
“I would have to spend like 20 minutes to an hour trying to get into the space to be able to write, to be able to solve problems,” Jusino Sánchez said.
People started to notice. A manager encouraged him to rest. He couldn’t tackle tourist activities when his mom visited Chicago. Moving around was difficult. He felt feverish in sudden bursts and had headaches and muscle soreness all the time. For months, he couldn’t sleep through the night, and his anxiety exploded, he said.
“A lot of malaise, on a day-to-day basis,” Jusino Sánchez said.
Six months after first becoming ill, he took medical leave from his graduate program and began to visit the Northwestern Medicine Comprehensive COVID-19 Center. There, testing showed basic exercises were making his blood oxygen levels drop to concerning levels. His cardiovascular condition had deteriorated too, stress tests showed.
Jusino Sánchez began to recover on leave with increasingly intense physical therapy and careful attention to rest and energy-consuming tasks. He returned to school and successfully defended his thesis in May to receive his doctoral degree. He feels more normal and can do many basic activities, like shopping for groceries, he said. Doctors told him that he recovered fast for a long COVID patient.
“And even then, I can still do the things that I need to do on a daily basis, but it sucks. It’s very hard,” he said.
As Jusino Sánchez struggled through long COVID, he often wondered if he was “just being a baby.” But he knows what he experienced and is experiencing is real.
He knows, too, that there are millions of people like him suffering from the lingering effects of COVID, he said. The possibility of long COVID is something that sticks out to him even as the pandemic is declared over.
“You might end up having a version of it,” he said. “So I think it’s very important as a society that we start thinking more about how we accommodate people with long COVID and how we try to stop it from happening in the first place.”
Northwestern patient Imani-Alima Ibrahim, 33, lost her taste and smell when she contracted COVID in March 2020. Three years later, and now with three apparent COVID-19 infections under her belt, she hasn’t gotten back those senses. She’s never fully smelled the boyfriend she began dating after her illness, she said.
Extreme fatigue, memory issues and bad migraines began to set in six months after her first infection, Ibrahim told the Tribune. It became hard to find the right word at times — a cumbersome issue for her at work in her private therapy practice, she said.
Ibrahim, who also works as a school social worker, had accepted and adapted to what seemed like her new life. But with the support of family and friends, she reached out to the Northwestern clinic last year.
She began comprehensive testing in April and is starting speech and occupational therapy next month. She’s also on new medication to combat fatigue and is doing smell training at home, she added.
“I’m really hopeful that there will be continued progress,” Ibrahim said.
Life likely won’t return to what it looked like before she got sick, she said. But a healthier “new normal” is possible, she added. She’s feeling more energy, and even gained a bit of scent and taste back, she said.
Ibrahim said even she is still surprised when she meets people struggling with long-term issues from COVID. Many people feel like they are out of the pandemic, she said, but there are people like her who aren’t done with the disease’s lingering effects.
Talking about that invisible illness is the first step to getting help, she said.
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