“The pain, you wear – 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 keeps quiet. There’s no explanation. There’s no reason. It’s just quiet.”
But unlike some “long-haulers” in the early pandemic, who struggled to persuade anyone that covid-19 symptoms could last for months, Chiluisa was attended by a team of experts.
He saw a pulmonologist, a cardiologist, a neurologist, a respiratory therapist and a physical therapist, and soon he could see a social worker for the toll caused by the coronavirus in his mind.
Although they continue to face the daily medical demands of the pandemic, caregivers like Chiluisa are adjusted to the fact that, for thousands of people, the long-term consequences of covid-19 are can be handled for months, and possibly even 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 many posts -covid-19 clinics open nationwide. “It will be a big problem. It will not go away. “
Chiluisa’s care was compiled by the Winchester Chest Clinic at Yale New Haven Hospital. The Center for Post-COVID Care run by the Mount Sinai health care system in New York City boasts clinical specialists from 12 disciplines on its website. Penn Medicine clinic in Philadelphia pays for 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 kidney failure, they do not have such expertise in covid-19, which is almost 10 months old.
“Patients are terrified because there are no clear answers for them,” said Denyse Lutchmansingh, Chiluisa’s pulmonologist. “They are happy to hear. They are happy that people are trying to help them. But at the end of the day, [they would] wants to be told with certainty ‘this will happen to you, it will not happen to you.’ And that is the hard part for us in medicine, because it is not entirely clear. ”
Clinics have learned, for example, that a wide spectrum of patients experience long-term symptoms, from those hospitalized to those with mild resistance, from childhood to adulthood. Southern Connecticut was hit early in the pandemic, when the virus spread to a larger area of New York City and little is known about the course of the disease.
“The symptoms they have every organ system,” said Jennifer Possick, medical director of the Winchester Chest Clinic. “It has more faces than I thought.”
No one knows how many lengths there may be, although a British team recently estimated that up to 10 per cent of people who contracted the disease suffer from chronic symptoms. In July, the Centers for Disease Control and Prevention reported that 35 percent of people with mild versions of covid-19 did not return to their pre-disease state within two to three weeks.
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 she was 11, and she 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 emergency department in early March when the virus hit the region. Exposed to a positive patient, he dropped with mild symptoms – pain, low-grade fever and some sweating, he said. By the time he was tried, the result was negative. Lutchmansingh said he would not know if Chiluisa had been infected with the novel coronavirus or some other pathogen.
In May, however, there was no doubt. Chiluisa woke up sweating profusely, with a fever of 103 degrees. At this time, he was positively tested for coronavirus.
He was hospitalized for seven days, five of them in intensive care, where he instructed the doctors not to put him in a fan, regardless of how severe his illness was. He fears the consequences of calming down and entering more of his successors, he said.
Instead, he was treated by doctors with a combination of drugs: remdesivir; tocilizumab, a drug used to fight rheumatoid arthritis and other autoimmune disorders; innovative plasma; a steroid; and even hydroxychloroquine, the drug that President Trump misrepresented as a therapy for the disease. The drug was later removed from Yale’s treatment regimen when research showed that it had no value and could harm patients.
“The doctor said, ‘We will give you a cocktail. If it works, you will live. If it doesn’t work, you will die, ‘”Chiluisa recalled. “And I agree with him, because I don’t 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 and sent back within a day in Junewhen oxygen drops in his blood at dangerous low levels. He was released again and continued to try negatively but to no avail.
Chiluisa seems to reflect most of the worst that the virus can do. Racing his heart. Her lungs are swollen. Her chest hurts and she feels compelled. Even now, he coughs up a thick mucus that gets worse despite various treatments. His sense of taste, which was not lost as in other covid-19 patients, changed.
More importantly, an MRI shows that the white matter of his brain is littered with tiny lesions that can cause neurological problems, including memory lapses, concentration problems, difficulty finding words and stuttering. He has insomnia, depression and anxiety, and other symptoms similar to post-traumatic stress disorder.
Brain lesions are more common in older people, or in uncontrolled metabolic disorders such as diabetes or chronic blood pressure, said his neurologist Arman Fesharaki-Zadeh. Chiluisa has no similar underlying conditions.
If the brain is a series of interconnected highways, each wound is a work zone that slows down the flow of information, Fesharaki-Zadeh said. They can also make Chiluisa prone to dementia at an earlier age.
“For someone with no history of metabolic disorder… For his brain to look like it to me is remarkable,” he said. No one 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 function normally.
Chiluisa’s heart and lung problems have other mysteries. Despite some lingering bacteria in her lungs that are currently resisting antibiotic treatment, Chiluisa normally performs tests on lung and heart function.
But instead of moving forward, his condition changed unpredictably as the months passed. He became windy and quickly exhausted. Her blood pressure rises rapidly.
“She has a lot of symptoms that persist, which seems to indicate an underlying heart condition, but our test, for the most part, has become normal,” said Erica Spatz, an associate professor of cardiovascular medicine at Yale School of Medicine who is Chiluisa’s cardiologist.
It is possible, he said, that the virus interferes with Chiluisa’s autonomic nerve system, which controls functions such as heart rate and respiration. Or maybe Chiluisa’s own immune and inflammatory response to the viral attack did the damage.
Symptoms are unlikely to be permanent, Spatz said, but it is unclear how long they will last.
“It feels so hard, because we don’t know,” he said. “And we learn as we go, and we learn from our patients and our patients about their experiences. And it’s so intense as a physician, not to feel like you’re ahead.”
Similarly, Lutchmansingh has no convincing explanation for why Chiluisa may have been so out of breath that he briefly put himself in extra oxygen on two recent occasions.
“Normal, run-of-the-mill lung function testing is normal,” he said. “But it is clear that he does not feel well. We are [examined] the former. We are going to the unusual. “He knows if the muscles that help the lungs breathe are functioning normally.
For Chiluisa and her family, the pain, and the anxiety it causes, including more than just financial issues, is exhausting. At one point in his confiscation, he said, he ran into his paid break time and Yale stopped paying him. Currently, the state of Connecticut medical insurance program covers its costs, but he believes Yale will pay the tab because he was exposed in the workplace. However, he is trying to make sure that a financial burden falls on him and his family.
A spokesman for the hospital declined to discuss Chiluisa’s work history.
Worried about replenishment, a very likely possibility, Chiluisa is also uncomfortable working at the hospital, where she currently performs management duties. And because he was still coughing, he also did not want to be with other people.Encouraged by his family, he was thinking of another career change.
“Psychologically, I am not ready. Physically, I am not ready, ”he said. “Psychologically worse than the physical part. You feel scared, afraid to go back to [emergency department].
“So my state of mind is ‘I don’t want to die.’ Do it that way. “