How suburban hospitals are handling 'long-haul' COVID-19 patients
It was hard enough for Alix Atwell when all four members of her family were stricken with COVID-19 more than a year ago, but the Barrington woman is also what physicians have dubbed a “COVID long-hauler.”
“I've had to make adjustments to the new me,” said Atwell, who just re-entered the workforce for the first time since the pandemic began. “I'm getting better, though, and it's not like it was when I couldn't get out of bed and walk to the kitchen and back.”
Long-haulers can develop an array of neurological and physiological symptoms after their recovery from the virus that doctors are just now beginning to piece together. But getting treatment often has been difficult for some because of that spectrum of problems.
“I want to go to a place where they all know me and what I'm dealing with,” Atwell said. “It needs to not be so disjointed.”
Edward-Elmhurst Health is one of several suburban health care systems that are creating one-stop clinics for long-haul COVID-19 patients.
“That is the purpose of the clinics — to provide individualized treatment plans for people,” said Dr. Nicholas Mathenia, an Edward-Elmhurst health neurologist. “There is no direct, one course of treatment that fits every patient.”
Officials at the hospital system announced the opening of 11 “Post-COVID Neuro Care Clinics” at Edward-Elmhurst's existing suburban neurology offices. Patients can visit the clinics' website eehealth.org/postcovidclinic for appointments, location details and details about treatment, or call (630) 527-7730.
While the clinics initially focus on neurological symptoms of patients, pulmonary and cardiology physicians are on staff for consultations on issues dealing with the lungs and heart.
“No one is seeing these patients present exactly like the next,” said Samantha Rodriguez, Edward-Elmhurst's neurosciences system manager. “And this is not a clinic where we're hoping to see year-over-year growth. We're hoping there won't be a need for this clinic over time.”
Many suburban hospital systems are tackling this new patient group in different ways, but most recognize a need for a multifaceted approach. Long-haulers typically have symptoms such as brain fog, lingering headaches, shortness of breath, chronic pain, persistent cough, sleeplessness, numbness or other health issues that didn't exist before they had COVID-19.
Northwestern Medicine in Chicago opened one of the region's first long-hauler clinics in the area in January and is now treating more than 1,500 patients in several suburban locations in its network, including Central DuPage Hospital in Winfield, Delnor Hospital in Geneva and Lake Forest Hospital.
Dr. Charles Davidson, a cardiologist and professor, is leading Northwestern's long-hauler's treatment program. He said initially he was surprised by how many long-haul patients experienced only mild COVID-19 symptoms.
“It's not reflective of hospitalizations,” he said. “We thought it was going to mostly be formerly hospitalized and ICU patients, but lo and behold it was primarily people with minimal reaction to the virus.”
Researchers estimate 30% of those infected with COVID-19 will develop long-haul symptoms.
There is no national research on long-haulers yet, but initial data collected through about 500 of Northwestern's early patients has shown the average age to be about 49 and predominantly female. Davidson said about two-thirds of the program's patients are women.
“We don't know of any preventive measures because we don't know exactly why some people get it and some don't,” he said, “but we are seeing recovery.”
The dominant theory among researchers and medical experts for the cause of these long-haul cases is an overstimulation of the body's immune system, which can cause an internal “inflammatory storm.”
“That's one theory, but there are several different theories,” Mathenia said. “You have to remember we're dealing with a disease that is only 18 months old, at least, and we're finding out more and more as this goes along and something new comes up.”
Therapies that have worked for similar disorders are used for post-COVID treatments, but sometimes medicinal options are deployed as well, doctors said. Learning that others have experienced similar issues and are recovering provides consolation for many patients, doctors said.
“There are two things that physicians notice,” said Dr. James Keller, chief medical officer at Advocate Aurora Lutheran General Hospital in Park Ridge. “They are seeing recovery and a significant appreciation (among patients) that their symptoms are being validated by the health care system.”
Atwell said when she first started experiencing her long-haul symptoms, it was difficult finding physicians who would listen. She discovered a specialized clinic at the University of Chicago and called for advice.
“It was reassuring and made me feel like I wasn't going crazy and that my symptoms were real,” she said.
Advocate Aurora physicians are handling long-haul cases as they come in and relying on primary care physicians to direct a patient's treatment plan, Keller said.
“We use the resources of our entire network, but the care is delivered locally,” Keller said.
At Arlington Heights' Northwest Community Hospital, plans are being ironed out to create a specialized clinic for long-haulers, said Dr. Michael Glickman.
Glickman suggested elderly patients with lower neurological acuity after a COVID-19 diagnosis might be served by follow-up exams in some of the long-hauler clinics.
He said there are likely many more long-haulers who aren't seeking treatment because they might believe their symptoms are just part of the aging process. He believes that's why the average age of long-haul patients appears to be younger than the average age of those who were more adversely affected by the virus.
“When younger patients present with these symptoms where it's a lack of concentration and memory issues, they're not used to that,” he said. “It really has a big impact on younger people because they've never experienced any of these type of mental deficits.”