“The disease it carries on you – body, mind and spirit,” Chiluisa, a 51-year-old hospital worker, said recently. “You can feel good all day, and suddenly your body just shuts down. No explanation. No reason. It just shuts down. ”
But unlike some “long-range” in the early part of the pandemic, who struggled to convince anyone that symptoms of covid-19 could last for months, Chiluisa joins a team by specialists.
He sees a pulmonologist, a cardiologist, a neurologist, a respiratory therapist and a physiotherapist, and soon he will see a social worker for the toll that coronavirus has inflicted on his psyche.
Even as they continue to address the daily medical demands of the pandemic, caregivers like Chiluisa are adapting to the reality that the long-term consequences of covid-1
Longers “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 the many post-covid-19 clinics opening around the country. . “It will be a big problem. It will not disappear. ”
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 System in New York City, boasts clinical specialists from 12 disciplines on its website. Penn Medicine’s clinic in Philadelphia considers itself a “clinical assessment and recovery after covid.”
While doctors have accumulated many years of experience in the long-term treatment of diseases such as diabetes and kidney failure, they have no such expertise in covid-19, which is barely 10 months old.
“Patients are very scared because no one has very clear answers to 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] likes to be told with certainty ‘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 entirely clear. ”
For example, clinicians have learned that a wide range of patients experience long-lasting symptoms, from those who were hospitalized to those who had mild seizures, from young to old. Southern Connecticut was hit early in the pandemic when the virus overwhelmed 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, Winchester Chest Clinic’s medical director. “It has so many more faces than I thought it would.”
No one knows how many long-distance carriers there may be, although a British team recently estimated that as many as 10 per cent of people who get the disease suffer from long-term 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 state of health before the disease two to three weeks later.
Many long-haul pilots 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 hit the region. Exposed to a positive patient, he came down with mild symptoms – pain, low fever and sweating, he said. When he could be tested, the result came back negative. Lutchmansingh said she will never know if Chiluisa was infected with the new coronavirus or another pathogen.
In May, however, there was no doubt. Chiluisa woke up sweating 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 instructed doctors not to put him in a ventilator, no matter how serious his illness became. He feared the consequences of sedation and intubation more than the alternatives, he said.
Instead, 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 mistakenly proclaimed the president of the drug Trump as a therapy for the disease. The drug was later removed from Yale’s treatment regimen as research showed it had no value and could harm patients.
The doctor said: ‘We will give you a cocktail. If it works, you live. If it does not work, you will die, ” reminded Chiluisa. “And I agreed with him because I did not want to be intubated.”
Chiluisa’s 24-year-old son was also infected, but his wife and two daughters did not get the disease.
Chiluisa recovered and was released from the hospital only to be readmitted one day in Junewhen the oxygen in his blood dropped to dangerously low levels. He was released again and has consistently tested negative but has never been well.
Chiluisa appears to contain much of the worst the virus can do. His heart is running. His lungs are inflamed. Chest pains and feels tight. Even now, he coughs up a thick mucus that gets worse despite a variety of treatments. His sense of taste, which did not disappear as it does in some other covid-19 patients, has changed.
Most ominously, an MRI shows that the white matter in his brain is filled with small lesions that may be the cause of neurological problems, including memory loss, difficulty concentrating, difficulty finding words and the stem. He has insomnia, depression and anxiety and other symptoms similar to post-traumatic stress disorder.
Brain lesions are more common in the elderly or in people 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 may also make Chiluisa prone to dementia at an earlier age.
“For someone without a history of metabolic disorder. . . for his brain looked like it did to me was pretty striking, ”he said. No one knows if Chiluisa’s dysfunctions are permanent or progressive, or if 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 the lungs that have so far resisted antibiotic treatment, Chiluisa performs relatively normally on tests of lung and heart function.
But instead of moving on, his condition has fluctuated unpredictably as the months have passed. He quickly gets winded and exhausted. His blood pressure rises rapidly.
“He has a lot of symptoms going on that seem to indicate an underlying heart disease, but our tests have mostly been normal,” said Erica Spatz, an associate professor of cardiovascular medicine at Yale School of Medicine who is Chiluisa’s cardiologist.
It is possible, she said, that the virus has disrupted Chiluisa’s autonomic nervous system, which controls functions such as heart and respiratory rates. Or maybe Chiluisa’s own immune and inflammatory response to the virus attack did the damage.
The symptoms are probably not permanent, Spatz said, but it is not clear how long they can last.
“This feels very hard because we do not know,” she said. “And we learn as we go, and we learn from our patients and with our patients about their experiences. And it is very disturbing as a doctor not to feel that you are ahead. ”
Similarly, Lutchmansingh has no conclusive explanation as to why Chiluisa may become so short of breath that he briefly sat on supplemental oxygen on two recent occasions.
“Edison’s normal lung function test is normal,” she said. “But he is clearly not feeling well. We have that [examined] the usual already. Now we go to the unusual. “She said she is investigating whether the muscles that help the lungs with breathing are functioning normally.
For Chiluisa and his family, the illness and the concern it has caused, including over financial problems, have become exhausting. At one point in his convalescence, he said, he ran through his paid free time, and Yale stopped paying him. Currently, the state of Connecticut’s health insurance program is taking up its costs, but he believes Yale will eventually have to pay the banner because he was exposed in the workplace. Still, he fears a financial burden will come upon him and his family.
A spokeswoman for the hospital declined to discuss Chiluisa’s employment history.
Concerned about re-infection, an extremely unlikely option, Chiluisa is also uncomfortable working at the hospital, where he is currently performing administrative tasks. And since he’s still coughing, he does not like being with other people either.Encouraged by his family, he is considering another career change.
“Psychologically I am not ready. Physically, I am not ready, ”he said. “The psychological part is even worse than the physical part. You feel scared, scared to return to [emergency department].
“So my mental state is ‘I do not want to die.’ Put it that way. ”