When COVID-19 cases surged into the Bay Area in December 2020, Kenny Wong, RN, remembers an unprecedented winter spent caring for COVID-19 patients in the ICU at the University of California, San Francisco (UCSF) Medical Center.
For Wong, the pandemic also took a personal toll when he learned that his beloved aunt in New York had died from COVID-19 complications.
“So many COVID-19 patients were admitted to the hospital with respiratory failure,” Wong said. “Even upon discharge, there were patients who continued to have symptoms such as coughing, shortness of breath, and sometimes a need for oxygen.”
Many of Wong’s former COVID-19 patients are now being seen at UCSF Health’s Optimal clinic. Founded in May 2020 by Lekshmi Santhosh, MD, a pulmonologist and critical care specialist at UCSF Health, the clinic is one of many specialized post-COVID care centers across the country.
Staffed by a multidisciplinary team, these centers treat COVID-19 patients who continue to have symptoms months after they have recovered from the acute phase of the illness.
The National Institutes of Health (NIH) refers to long-term COVID-19 symptoms as PASC (post-acute sequelae of SARS-CoV-2). Post-COVID syndrome, long COVID, or long-term COVID are terms that are also used. Patients living with post-COVID syndrome are often called “long haulers.”
In It for the Long Haulers
Megan Kelso, RN, works in the Post-COVID Care Clinic at Baylor College of Medicine in Houston, Texas. “Our post-COVID patients are experiencing lasting symptoms that create an overall sense of uneasiness,” Kelso said. “It’s imperative to allow enough time for the patients to voice their concerns and for us to be exceptional listeners and try to alleviate their anxiety.”
Kelso said that while the Baylor Post-COVID clinic treats patients of all ages, the majority are between 40 and 60 years old, and there’s an almost 2 to 1 female-to-male ratio.
Post-COVID clinics, like the one at Baylor, were launched to offer long haulers the specialized care they need under one roof. Many of the patients have multiple system concerns.
A study conducted by the Stanford School of Medicine and published in the May 26, 2021, JAMA Network Open, found that 70% of COVID-19 patients in studies, most of whom were hospitalized, reported 84 different symptoms months after they became ill.
Some of the more common long hauler symptoms include:
- Anxiety and depression
- Pulmonary issues
- Brain fog
- Loss of taste and smell
- Memory issues
A project to study long COVID was launched this past February by the NIH, which is allocating $1.5 billion towards research “to identify the causes and ultimately the means of prevention and treatment of individuals who have been sickened by COVID-19, but don’t recover fully over a period of a few weeks.”
Post-COVID Treatments Can Vary
Norma Wright, RN, is a clinical coordinator on the Post-Acute COVID-19 team at Johns Hopkins Medicine in Baltimore. The team is a collaboration between the Department of Pulmonary and Critical Care Medicine, the Department of Physical Medicine and Rehabilitation and the Johns Hopkins Home Care Group.
Wright said patients qualify to be treated at the clinic if they spent more than 48 hours in the ICU; were hospitalized and have persistent respiratory symptoms; had new or increased oxygen requirements at discharge; or were referred after an inpatient pulmonary consultation. Patients who were never hospitalized also can be referred if they have persistent symptoms eight weeks after their COVID-19 diagnosis.
Patients first undergo a full assessment to determine the full scope of their symptoms. Wright said many arrive frustrated after being told by other healthcare professionals that their symptoms are “all in their head.”
“Some patients break down when they talk about the impact their symptoms have on their quality of life,” Wright said. “They want to be able to return to work or take care of their family. It’s hard for them to battle symptoms that many can’t see or understand.”
When the Johns Hopkins clinic first opened, Wright said most patients were over 50. Today, the demographics have changed, and the clinic is treating more younger patients, with the majority in their 30s and 40s.
For long haulers, there is no “one size fits all” approach to recovery. Wright said those with short-term memory problems, poor recall, and other cognitive issues might be referred to cognitive rehabilitation typically used for patients who have sustained concussions or traumatic brain injuries. Patients experiencing anxiety, depression, and insomnia might be referred to a mental health professional. Patients with multiple symptoms might work with several specialists.
The good news, said Wright, is that many post-COVID patients recover. Some who were previously unvaccinated, show improvements after receiving the COVID-19 vaccine. According to a PBS report, early research indicates that about a third of patients with long COVID feel better after the vaccine.
“Each patient presents and recovers differently, although the majority of post-COVID patients do see improvements,” Wright said. “We have patients who return to their baseline, who are able to return to work, and some who achieve a new normal.”
At the Parkview Post-COVID clinic in Fort Wayne, Indiana, Cassie Rentschler, NP, said it’s also important to get to the root cause of a patient’s symptoms.
“If they say they’re experiencing fatigue, we ask how they’re sleeping at night, whether they’re practicing good sleep hygiene, and to differentiate between being tired and true fatigue,” she said. “In several cases, we’ve found that patients are suffering from undiagnosed sleep apnea, unrelated to their other post-COVID symptoms.”
Rentschler said each patient receives an individualized treatment plan and reassurance that their symptoms are very real.
“We also have a support group for our post-COVID patients to help them realize they aren’t alone,” she said.
Since the pandemic is changing, with different variants presenting, Rentschler said she and her colleagues are learning about best practices for post-COVID along with the patients.
“We’re constantly learning new information about the long-term effects of the virus, compiling information, and identifying trends with symptoms,” Rentschler said. “Above all, we listen to each patient, answer their questions and concerns, and help them manage their symptoms as they work to recover.”
Get information on our COVID-19 resources.