Doctors search for treatments for COVID-19 ‘long-haulers’ with few guides

COVID-19 took its best shot at Edison Chiluisa in May, sending him to intensive care, but the disease is still not done with him. For the past four months, long after his release from the hospital, Chiluisa has been racked by lingering ailments: Paralyzing fatigue. Shortness of breath. A stutter he never had before.

“The disease, it wears on you—body, mind and spirit,” Chiluisa, a 51-year-old hospital worker, said recently. “You can be fine all day, and then all of a sudden, your body just shuts down. No explanation. No reason. It just shuts down.”

But unlike some “long-haulers” in the early part of the pandemic, who struggled to persuade anyone that symptoms of COVID-19 could last for months, Chiluisa is being attended by a team of specialists.

He sees a pulmonologist, a cardiologist, a neurologist, a respiratory therapist and a physical therapist, and soon he will see a social worker for the toll the coronavirus has inflicted on his psyche.

Even as they continue to face the day-to-day medical demands of the pandemic, caregivers like Chiluisa’s are adjusting to the reality that, for many thousands of people, the long-term consequences of COVID-19 may have to be managed for months, and possibly much longer.

Long-haulers “are in every country, in every language,” said Igor J. Koralnik, who started a program for COVID-19 neurocognitive problems at Northwestern Memorial Hospital in Chicago, one of numerous post-COVID-19 clinics opening around the country. “It’s going to be a big problem. It’s not going to go away.”

Chiluisa’s care is coordinated by the Winchester Chest Clinic at Yale New Haven Hospital. The Center for Post-COVID Care operated by the Mount Sinai health-care system in New York City boasts clinical specialists from 12 disciplines on its website. Penn Medicine’s clinic in Philadelphia bills itself as a “post-COVID assessment and recovery clinic.”

While doctors have accumulated many years of experience in the long-term management of diseases such as diabetes and renal failure, they have no such expertise in COVID-19, which is barely 10 months old.

“The patients are very scared because nobody has very clear answers for them,” said Denyse Lutchmansingh, Chiluisa’s pulmonologist. “They are happy to feel heard. They are happy that people are trying to help them. But at the end of the day, [they would] like to be told for sure ‘this is what is going to happen to you, this is not what is going to happen to you.’ And that’s the part that’s difficult for us in medicine, because it’s not completely clear.”

Clinicians have learned, for example, that a wide spectrum of patients experience long-term symptoms, from those who were hospitalized to those who had mild bouts, from the young to the old. Southern Connecticut was hit early in the pandemic, when the virus was overwhelming the greater New York City area and relatively little was known about the course of the disease.

“The symptoms that they have span every organ system,” said Jennifer Possick, the Winchester Chest Clinic’s medical director. “It has so many more faces than I thought it would.”

No one knows how many long-haulers there may be, although a British team recently estimated that as many as 10 percent of the people who contract the disease suffer prolonged symptoms. In July, the Centers for Disease Control and Prevention reported that 35 percent of people who had mild versions of COVID-19 had not returned to their pre-disease state of health two to three weeks later.

Many long-haulers have organized online support groups, such as Survivor Corps and Body Politic, to share tips and discuss symptoms.

Chiluisa’s family moved from Ecuador to Connecticut when he was 11, and he grew up in the area. He worked as an EMT, owned a bakery and then went back to school to become a CT scan technician at Yale New Haven Hospital.

He was in the hospital’s emergency department in early March when the virus struck the region. Exposed to a positive patient, he came down with mild symptoms—aches, low-grade fever and some sweating, he said. By the time he could get tested, the result came back negative. Lutchmansingh said she will never know whether Chiluisa was infected then by the novel coronavirus or some other pathogen.

In May, however, there was no doubt. Chiluisa awoke sweating profusely, with a fever of 103 degrees. This time, he tested positive for the coronavirus.

He was hospitalized for seven days, five of them in intensive care, where he directed doctors not to put him on a ventilator, regardless of how severe his illness became. He feared the consequences of sedation and intubation more than the alternatives, he said.

Instead, physicians treated him with a combination of drugs: remdesivir; tocilizumab, a drug used to combat rheumatoid arthritis and other autoimmune disorders; convalescent plasma; a steroid; and even hydroxychloroquine, the drug President Donald Trump touted as a therapy for the disease. The drug was later removed from Yale’s treatment regimen when research showed it had no value and could harm patients.

“The doctor said, ‘We’re going to give you a cocktail. If it works, you live. If it doesn’t work, then you die,’ ” Chiluisa recalled. “And I agreed with him, because I didn’t want to be intubated.”

Chiluisa’s 24-year-old son became infected as well, but his wife and two daughters did not get the disease.

Chiluisa recovered and was released from the hospital only to be readmitted for a day in June when the oxygen in his blood dropped to dangerously low levels. He was released again and has consistently tested negative but has never felt well.

Chiluisa seems to embody much of the worst the virus can do. His heart races. His lungs are inflamed. His chest aches and feels constricted. Even now, he coughs up a thick mucus that is becoming worse despite a variety of treatments. His sense of taste, which did not disappear as it has in some other COVID-19 patients, has been altered.

Most ominously, an MRI shows that the white matter of his brain is littered with tiny lesions that may be the cause of neurological problems, including memory lapses, trouble concentrating, difficulty finding words and stuttering. He has insomnia, depression and anxiety, and other symptoms that resemble post-traumatic stress disorder.

The brain lesions are more commonly found in older people, or those with uncontrolled metabolic disorders such as diabetes or chronic high blood pressure, said his neurologist, Arman Fesharaki-Zadeh. Chiluisa has no such underlying conditions.

If the brain is a series of interconnected highways, each lesion is a work zone that slows the flow of information, Fesharaki-Zadeh said. They also may make Chiluisa prone to dementia at an earlier age.

“For someone without a history of metabolic disorder . . . for his brain to look the way it did to me was quite striking,” he said. No one knows whether Chiluisa’s dysfunctions are permanent or progressive, or whether his brain will find new paths around the obstacles and restore his ability to live and work normally.

Chiluisa’s heart and lung problems present other mysteries. Despite some lingering bacteria in his lungs that so far have resisted antibiotic treatments, Chiluisa performs relatively normally on tests of pulmonary and cardiac function.

But instead of progressing, his condition has fluctuated unpredictably as the months have passed. He becomes winded and exhausted quickly. His blood pressure rises rapidly.

“He has a lot of symptoms that are ongoing, that are seemingly suggestive of an underlying heart condition, but our testing, for the most part, has been normal,” said Erica Spatz, an associate professor of cardiovascular medicine at the Yale School of Medicine who is Chiluisa’s cardiologist.

It’s possible, she said, that the virus has disrupted Chiluisa’s autonomic nervous system, which controls functions such as heart and respiratory rates. Or perhaps Chiluisa’s own immune and inflammatory response to the viral attack did the damage.

The symptoms are likely not permanent, Spatz said, but it’s not clear how long they may last.

“This feels very hard, because we don’t know,” she said. “And we’re learning as we go, and we’re learning from our patients and with our patients about their experiences. And that’s very unsettling as a physician, to not feel that you’re ahead.”

Similarly, Lutchmansingh has no conclusive explanation for why Chiluisa can become so short of breath that he briefly put himself on supplemental oxygen on two recent occasions.

“Edison’s normal, run-of-the-mill lung-function testing is normal,” she said. “But he clearly doesn’t feel well. We’ve [examined] the usual already. Now we’re going to the unusual.” She said she is exploring whether the muscles that aid the lungs in respiration are working normally.

For Chiluisa and his family, the disease, and the worry it has caused, including over financial issues, has become exhausting. At one point in his convalescence, he said, he ran through his paid time off and Yale stopped paying him. Currently, the state of Connecticut’s medical insurance program is picking up his costs, but he believes Yale will eventually have to pay the tab because he was exposed in the workplace. Still, he frets that a financial burden will fall on him and his family.

A spokeswoman for the hospital declined to discuss Chiluisa’s employment history.

Worried about reinfection, an extremely unlikely possibility, Chiluisa is also uncomfortable working at the hospital, where he currently performs administrative duties. And since he is still coughing, he also doesn’t like being around other people.Encouraged by his family, he is contemplating another career change.

“Psychologically, I’m not ready. Physically, I’m not ready,” he said. “The psychological is even worse than the physical part. You feel afraid, afraid to go back to the [emergency department].

“So my mental state is ‘I don’t want to die.’ Put it that way.”