“The disease takes you on: body, mind and spirit,” said Chiluisa, a 51-year-old hospital worker recently. “You can be fine all day and then suddenly your body shuts down. No explanation. No reason. Turns off. “
But unlike some “long-haul transporters” in the early part of the pandemic, who struggled to convince anyone that covid-19 symptoms could last for months, Chiluisa is assisted by a team of specialists.
He sees a pulmonologist, cardiologist, neurologist, respiratory therapist, and physical therapist, and will soon see a social worker for the toll the coronavirus has inflicted on his psyche.
Even as they continue to address the daily medical needs of the pandemic, healthcare workers like Chiluisa are adapting to the reality that, for many thousands of people, the long-term consequences of covid-1
Long-haul travelers “are in every country, in every language,” said Igor J. Koralnik, who initiated a covid-19 neurocognitive program at Northwestern Memorial Hospital in Chicago, one of several post-covid clinics. 19 open across the country. “It will be a big problem. It won’t go away.”
Chiluisa’s care is coordinated by the Winchester Chest Clinic at Yale New Haven Hospital. The Center for Post-COVID Care run by the Mount Sinai Health System in New York City boasts clinical specialists from 12 disciplines on its website. Penn Medicine Clinic in Philadelphia bills itself as a “post-covid evaluation and recovery clinic.”
Although doctors have accumulated many years of experience in the long-term management of diseases such as diabetes and kidney failure, they do not have that experience with covid-19, which is just 10 months old.
“Patients are very scared because no one has very clear answers for them,” said Denyse Lutchmansingh, a pulmonologist in Chiluisa. “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 with certainty “this is what is going to happen to you, not what is going to happen to you.” And this is the part that is difficult for us in medicine, because it is not completely clear. “
Doctors have learned, for example, that a broad spectrum of patients experience long-term symptoms, from those who have been hospitalized to those who have had mild attacks, from young to old. Southern Connecticut was hit early in the pandemic, when the virus was sweeping the greater New York City area and relatively little was known about the course of the disease.
“The symptoms they have span every organ system,” said Jennifer Possick, medical director of the Winchester Chest Clinic. “He has so many more faces than I thought.”
No one knows how many long-haul transporters there may be, although a British team recently estimated that as many as 10% of people who contract the disease suffer from 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 pre-illness health two to three weeks later.
Many long-haul travelers 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 technician at Yale New Haven Hospital.
In early March he was in the hospital emergency room when the virus struck the region. Exposed to a positive patient, he experienced mild symptoms: aches, mild fever, and some sweating, he said. When he managed to take the test, the result came back negative. Lutchmansingh said he will never know if Chiluisa was infected with the new coronavirus or some other pathogen then.
In May, however, there was no doubt. Chiluisa woke up sweating profusely, with a fever of 103 degrees. This time he tested positive for coronavirus.
He was hospitalized for seven days, five of them in intensive care, where he ordered doctors not to put him on a ventilator, regardless of the severity of his illness. He feared the consequences of sedation and intubation more than the alternatives, he said.
Instead, the doctors treated him with a combination of drugs: remdesivir; tocilizumab, a drug used to fight rheumatoid arthritis and other autoimmune disorders; convalescent plasma; a steroid; and even hydroxychloroquine, the drug that President Trump incorrectly advertised as a therapy for the disease. The drug was later removed from Yale’s treatment regimen when research showed it was of no value and could harm patients.
“The doctor said, ‘We will give you a cocktail. If it works, live. If it doesn’t work, you die,” Chiluisa recalled. “And I agreed with him, because I didn’t want to be intubated.”
Chiluisa’s 24-year-old son was also infected, but his wife and two daughters did not contract the disease.
Chiluisa recovered and was discharged from the hospital only to be readmitted for a day in Junewhen the oxygen in his blood dropped to dangerously low levels. He was released again and consistently tested negative but never felt right.
Chiluisa appears to embody much of the worst the virus can do. His heart is beating fast. His lungs are inflamed. His chest hurts and he feels constricted. Even now, he coughs with thick mucus that is getting worse despite a variety of treatments. His sense of taste, which has not disappeared as in other covid-19 patients, has been altered.
More ominously, an MRI shows that his brain’s white matter is littered with tiny lesions that can be the cause of neurological problems, including memory lapses, difficulty concentrating, difficulty finding words, and stuttering. He has insomnia, depression and anxiety, and other symptoms that resemble post-traumatic stress disorder.
Brain injuries are most commonly found in older people or those with uncontrolled metabolic disorders such as diabetes or chronic hypertension, said his neurologist, Arman Fesharaki-Zadeh. Chiluisa does not have such basic conditions.
If the brain is a series of interconnected highways, each injury is a work area that slows the flow of information, Fesharaki-Zadeh said. They can also make Chiluisa prone to dementia at an early age.
“For someone without a history of metabolic disorder. . . that his brain looked like it did to me was quite surprising, “he said. Nobody knows if Chiluisa’s dysfunctions are permanent or progressive, or if his brain will find new paths around obstacles and restore his ability to live and work normally.
Chiluisa’s heart and lung problems present other mysteries. Despite some persistent bacteria in his lungs that have so far resisted antibiotic treatments, Chiluisa behaves relatively normally in lung and heart function tests.
But instead of progressing, his condition fluctuated unpredictably as the months went by. Become breathless and exhausted quickly. His blood pressure rises rapidly.
“She has a lot of ongoing symptoms, which seem to suggest an underlying heart condition, but our tests, for the most part, have been normal,” said Erica Spatz, associate professor of cardiovascular medicine at Yale School of Medicine who is the cardiologist. by Chiluisa.
It’s possible, he said, that the virus disrupted Chiluisa’s autonomic nervous system, which controls functions such as heart rate and breathing. Or perhaps Chiluisa’s immune and inflammatory response to the viral attack did the damage.
Symptoms likely aren’t permanent, Spatz said, but it’s unclear how long they can last.
“This looks very difficult, because we don’t know,” he said. “And we are learning as we go, and we are learning from our patients and with our patients their experiences. And this is very disturbing as a doctor, not to feel like you are ahead.”
Likewise, Lutchmansingh doesn’t have a conclusive explanation as to why Chiluisa may become so out of breath that he briefly put on supplemental oxygen on two recent occasions.
“Edison’s normal lung function test is normal,” he said. “But he clearly isn’t feeling well. We have [examined] already the usual. Now let’s go to the unusual. “He said he’s looking into whether the muscles that help the lungs breathe are functioning normally.
For Chiluisa and her family, the illness and worry it caused, including financial issues, became exhausting. At some point in his recovery, he said, he spent his paid vacation period and Yale stopped paying him. Currently, Connecticut’s state medical insurance program is upping its costs, but he believes Yale will eventually have to foot the bill because it has been exposed in the workplace. However, he fears that a financial burden will fall on him and his family.
A hospital spokesperson refused to discuss Chiluisa’s work history.
Worried about reinfection, an extremely unlikely possibility, Chiluisa is also uncomfortable working in the hospital, where she currently performs administrative duties. And because he’s still coughing, he doesn’t even 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 part is even worse than the physical one. Are you afraid, afraid to go back to [emergency department].
“So my state of mind is ‘I don’t want to die’. Let’s put it this way.”