The long-haulers: Long Covid clinics guide patients on the slow path to recovery

Patricia Hill was diagnosed with COVID-19 in September 2021, dealing with a runny nose and additional allergy-like symptoms. Though Hill lost her sense of smell, she did not spend time at the hospital, or get put on a dreaded ventilator.

Despite her moderate symptoms, an immediate return to normalcy was not to be. Hill ended up with long COVID, a medical mystery that inflicts as many as 20% to 30% of people who contract COVID-19. These “long-haulers” undergo a wide range of ongoing issues, causing health problems that can last weeks, months or even years.

Patricia Hill“I went from bronchitis to pneumonia to congestive heart failure all within two weeks,” says Hill, 76. “I hadn’t even been thinking about long COVID. My whole thing was just about going from day to day.”

The Shaker Heights resident has been treated by University Hospitals COVID Recovery Clinic since February and her symptoms continue to improve. Greater Cleveland’s three major hospital systems have opened long-haul recovery clinics within the last year. In addition to UH, Cleveland Clinic and MetroHealth provide diagnosis and multidisciplinary treatment for long COVID, also known as Post-Acute Sequelae of SARS COVID-19 (PASC), which can affect anyone who had a COVID-19 infection—regardless of age, gender or severity of initial symptoms.
In Hill’s case, she began coughing up phlegm ten days after quarantine, the first indication of a downward spiral that would include persistent fatigue and headaches. Eventually, the career insurance executive was diagnosed with tachycardia and bradycardia, meaning that her heart fluctuated from beating too fast to beating too slow.

At UH, she has harnessed a network of specialists who alleviated concerns that her post-COVID troubles were permanent. On the treatment side, Hill was given medication for her heart problems, coupled with physical therapy and acupuncture with UH’s integrative medicine team.

The UH clinic has evaluated about 500 patients like Hill since its August 2021 inception.

Clinic medical director David Rosenberg and his staff have treated the entire spectrum of long-haul symptoms, even as new personalized treatments are developed for a syndrome the medical world is still learning about. What’s more, each clinic has treated patients who developed long COVID infections after either mild or severe cases.

UH COVID Recovery Clinic medical director David Rosenberg, far right, and staff member Juliane Torer, Internal Medicine Nurse Practitioner talk with a Long Covid patient at University Hospitals COVID Recovery Clinic in the Risman PavilionIndividuals with long COVID experience a myriad of symptoms that vary in severity and duration. Extreme fatigue, brain fog, shortness of breath, heart palpitations, and loss of taste and smell are common symptoms. More serious complications that include inflammation of the heart muscle, lung function abnormalities, and Postural Orthostatic Tachycardia Syndrome (POTS)— a condition causing lightheadedness, fainting and an increased heart rate upon standing—have also occurred with long-haulers.

“The idea behind the clinic is not just to see patients, determine their complaints, and send them outward,” says Rosenberg. “That would be a disservice, because these people have been to specialists already.”

‘Look at me now’
While patients with long COVID may seek medical help, all too often their symptoms are not recognized as COVID-related, Rosenberg notes. Upon studying this landscape, UH designed its clinic around every physical and mental aspect of the patient’s illness.

For instance, a person with respiratory problems is sent to Rosenberg, whose concentration is pulmonology. The tricky aspect of long COVID is that many patients have combinations of symptoms—all the better that cardiology, gastroenterology, rheumatology, rehabilitative medicine, and behavioral health are all part of the UH network of long-haul helpers.

“Most of the folks we see have multiple symptoms,” says Rosenberg. “The question we must ask is which are more significant, and how do we pursue them in a diagnostic fashion: Is shortness of breath non-specific [to long COVID], or could it be a symptom of deep-seated COVID complication?”

According to the Centers for Disease Control and Prevention, more than 40% of U.S. adults reported having COVID-19 since March 2020. In July, White House COVID-19 response coordinator Ashish Jha said that at least 70% of the U.S. population have likely already contracted COVID. Meanwhile, nearly one in five (19%) are currently having symptoms of long COVID, defined as disease indicators lasting three or more months after first contracting the virus.

Long COVID poses a risk to vaccinated people as well. Research from Washington University School of Medicine in St. Louis showed lingering symptoms impacting the heart, brain, lungs, and other parts of the body. The same study of more than 13 million veterans also found that vaccination reduced the risk of death by 34%, and the risk of long COVID by 15%.

What is not as evident are how many Long COVID cases there are in Ohio.
“Long COVID is not an officially defined condition or diagnosis, but rather a widely varying set of symptoms experienced by many people who have recovered from a COVID-19 infection,” an Ohio Department of Health spokesperson (ODH) said in an email. “It is not a reportable condition, which means healthcare providers do not have to report cases to ODH. Therefore, we do not have any data about the number of Ohioans who experience this condition.”

As the cases pile up, so do disease impacts. Brain fog, fatigue and other debilitating long COVID problems are keeping the equivalent of two to four million Americans out of work—lost earnings and increased medical costs of this shortfall could drain the economy of $2.6 trillion annually.

Cleveland Clinic’s ReCOVer Clinic acts as a bulwark against the pandemic’s most harmful long-term outcomes. The facility sees about 150 new patients a month, all of them experiencing enduring symptoms at least 28 days after being diagnosed with COVID-19.

Patients receive a work-up by clinic providers, including a comprehensive lab panel that helps determine which of the clinic’s 18 post-COVID specialty arms are the best fit. Echoing his fellow practitioners at UH, medical director William Lago says most patients are sent to multiple specialists following the initial check-up.

“That’s the rule, not the exception,” says Lago. “People will present with anywhere from a few to a dozen different symptoms that all started with COVID and don’t seem to go away.”

The time frame on these indicators varies, although ReCOVer has treated patients who became ill at the start of the virus crisis and never fully recovered. What they have most in common is an inability to function at a level near what they are used to.

Cleveland State University student Marissa DurandCleveland State University student Marissa Durand can attest to the syndrome’s life-altering nature. Durand came to CSU to play volleyball—an aspiration derailed by two years of post-COVID symptoms.

After a difficult go-round with the virus in August 2020, Durand noticed how her heart would race when she stood. An EKG and other tests led to a POTS diagnosis. By October 2020 Durand was passing out almost daily and getting debilitating migraines. Concussion-like symptoms from POTS led to some uncomfortable conversations with concerned friends and family.

“You can look drunk (with POTS), because there’s no blood flow to the brain,” says Durand. “I saw my old roommate and she asked if I’d been drinking. No, it was POTS. That’s just how your whole body is impacted.”

Durand worked with Clinic cardiologist Tamanna Singh, who ordered more tests after noticing her patient’s heart rate spikes. Treatments were often a trial-and-error situation until Durand started taking a beta blocker called propranolol, which reduces tachycardia in patients with POTS. A low-impact cardio plan also helped get the outgoing student-athlete back in business.

Now 21, Durand is playing club volleyball while preparing for a medical sales career. Even if she never plays Division I volleyball again, Durand is far from the dark days when she had to crawl to her bedroom after a severe POTS attack.

“I’m very happy with what I can do now, and what my body can handle,” Durand says. “I didn’t notice the progress I made each day, but I can look back and say, ‘Look what I can do now.’”

Coping with the new normal
By the fall of 2020, primary care physicians throughout Northeast Ohio and beyond were seeing patients with similar symptoms including dizziness, fatigue and shortness of breath. As all these patients had a previous COVID-19 infection, clinicians decided to create dedicated facilities where continuous guidance and treatment can be given.

“We recognized early on, given the number of patients who were having symptoms, that these patients needed a place to go to have their symptoms validated,” says Nora Singer, a director of rheumatology at MetroHealth who also leads the system’s post-COVID clinic.

University Hospitals COVID Recovery Clinic at the Aujha Medical Center’s Risman PavilionHeaded by Singer, the clinic is staffed by a rheumatologist, two primary care physicians, a rheumatology nurse practitioner, and a primary care nurse practitioner. Coordination between the clinic and a team of subspecialties is ongoing and connects patients to the appropriate specialist in determining the best treatment options.

While there are no proven therapies for post-COVID syndrome, Singer hopes to provide solutions as co-principal investigator on the National Health Institute’s Researching COVID to Enhance Recovery Initiative (RECOVER). The program has already enrolled nearly three-quarters of the 200-plus patients treated at the MetroHealth clinic. Understanding the different “flavors” of long COVID will be key to symptom management in the years ahead.

“The most difficult symptoms to treat are the autonomous nervous system problems, which include POTS or symptoms that look like chronic fatigue syndrome,” Singer says. “For some of the problems around thinking, we have to make sure people are practicing good sleep hygiene or doing thinking exercises to speed up cognitive function. And if we stop inflammation for lung issues, will we get better overall outcomes? We don’t know that yet.”

What Singer and other long COVID fighters do know is that assessing the syndrome will be a years-long process. In the interim, patients will require empathy and a strong foundation of mental health support.

For Hill—the long-hauler from Shaker Heights—recovery may not mean getting back the entirety of her old self. Her new normal requires enjoying pastimes such as live music and cooking without overextending herself.

Aspects of life Hill took for granted—like climbing her apartment stairs without bone-crushing fatigue—are now reasons for celebration.

“Today, I’m active and have more energy,” says Hill. “I still have to be careful, but nothing has robbed me of my joy. I’m back to working hard and having fun again.”

This story is sponsored by the Northeast Ohio Solutions Journalism Collaborative, which is composed of 16-plus Northeast Ohio news outlets including FreshWater Cleveland.

Read more articles by Douglas J. Guth.

Douglas J. Guth is a Cleveland Heights-based freelance writer and journalist. In addition to being senior contributing editor at FreshWater, his work has been published by Midwest Energy News, Kaleidoscope Magazine and Think, the alumni publication of Case Western Reserve University. A die-hard Cleveland sports fan, he also writes for the cynically named (yet humorously written) blog Cleveland Sports Torture. At FreshWater, he contributes regularly to the news and features departments, as well as works on regular sponsored series features.