“The disease is on you – body, mind and spirit,” said Chiluisa, a 51-year-old hospital worker. “You can feel good all day and suddenly your body just shuts down. There is no explanation. No reason. It just shuts off. “
But unlike some “long hauliers” in the early part of the pandemic, who struggled to convince anyone that the symptoms of covid-19 could last for months, Chiluisa was visited by a team. of specialists.
He meets with a pulmonologist, cardiologist, neurologist, respiratory therapist and physiotherapist and will soon see a social worker for the charge caused by the coronavirus on his psyche.
Although they continue to face the daily medical demands of the pandemic, caregivers like Chiluisa are adjusting to the reality that for many thousands of people, the long-term effects of covid-1
Long-haul transporters are “in every country, in every language,” said Igor J. Koralnik, who launched a covid-19 neurocognitive problem program at Northwestern Memorial Hospital in Chicago, one of the many post-covid-19 clinics found in the country. “It will be a big problem. It will not disappear. “
Chiluisa care is coordinated by the Winchester Chest Clinic at Yale New Haven Hospital. The post-COVID care center, managed by Mount Sinai Health System in New York, has clinicians from 12 disciplines on its website. The Penn Medicine Clinic in Philadelphia has been declared a “covid assessment and recovery clinic.”
While doctors have gained many years of experience in the long-term management of diseases such as diabetes and kidney failure, they do not have such experience in covid-19, which is only 10 months old.
“Patients are very scared because no one has very clear answers about them,” said Dennis Luchmansingh, a Chiluisa 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] I like to be told for sure “this will happen to you, not what will happen to you”. And this is the part that is difficult for us in medicine because it is not completely clear. “
Clinicians have learned, for example, that a wide range of patients experience long-term symptoms, from hospitalized to mild to mild, from young to old. Southern Connecticut was affected at the beginning of the pandemic, when the virus spread to most of New York and relatively little was known about the course of the disease.
“The symptoms they have cover every organ system,” said Jennifer Posick, medical director of the Winchester clinic. There are so many more faces than I thought there would be.
No one knows how long carriers can be, although a British team recently estimated that about 10% of people who become infected 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 did not return to their health before the disease two to three weeks later.
Many long-term carriers 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 returned to school to become a tomography 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 faces mild symptoms – pain, fever and a little sweating, he said. While it could be tested, the result returned negative. Lutchmansingh said he would never know if Chiluisa had been infected with the new coronavirus or another pathogen.
In May, however, there was no doubt. Chiluisa woke up sweating profusely with a temperature 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 on a ventilator, no matter how severe his illness. He fears the effects of sedation and intubation more than the alternatives, he said.
Instead, doctors treated him with a combination of drugs: remdezivir; tocilizumab, a medicine used to fight rheumatoid arthritis and other autoimmune diseases; restorative plasma; steroid; and even hydroxychloroquine, the drug president Trump mistakenly advertised as a therapy for the disease. The drug was later removed from Yale’s treatment regimen when tests showed it was of no value and could harm patients.
“The doctor said, ‘We’ll give you a cocktail. If it works, you live. If it doesn’t work, then you will die, “Chiluisa recalls. “And I agreed with him because I didn’t want to be intubated.”
Chiluisa’s 24-year-old son also became infected, but his wife and two daughters did not get the disease.
Chiluisa recovers and is released from hospital only to be readmitted for one day in Junewhen the oxygen in his blood dropped to dangerously low levels. He was released again and constantly experiences negative results, but never feels well.
Chiluisa seems to embody many of the worst that the virus can do. His heart races. His lungs are inflamed. His chest hurts and he feels tight. Even now he coughs up thick mucus, which is getting worse, despite various treatments. His sense of taste, which has not disappeared, as in some other patients with covid-19, has changed.
The most sinister MRI shows that the white matter in his brain is littered with small 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 that resemble post-traumatic stress disorder.
Brain lesions are more common in the elderly or those with uncontrolled metabolic disorders such as diabetes or chronic high blood pressure, said his neurologist Arman Fesharaki-Zade. Chiluisa does not have such basic conditions.
If the brain is a series of interconnected highways, each lesion is a work area that slows the flow of information, Fesharaki-Zade said. They can also make Chiluisa predisposed to dementia at an earlier age.
“For someone without a history of metabolic disorders. . . his brain to look the way it seemed to me was pretty astounding, ”he said. No one knows whether Chiluisa’s dysfunctions are permanent or progressive, or whether his brain will find new paths around obstacles and restore his ability to live and work normally.
Chiluisa’s heart and lung problems reveal other mysteries. Despite some bacteria remaining in the lungs that have so far been opposed to antibiotic treatment, Chiluisa performs relatively normal tests for lung and heart function.
But instead of progressing, his condition fluctuates unpredictably as the months go by. It quickly swells and exhausts. His blood pressure is rising rapidly.
“He has a lot of persistent symptoms that at first glance suggest major heart disease, but most of our tests are normal,” said Erika Spatz, an associate professor of cardiovascular medicine at Yale High School of Medicine who is a Chiluisa cardiologist. .
It is possible, she said, that the virus has disrupted Chiluisa’s autonomic nervous system, which controls functions such as heart rate and respiratory rate. Or maybe Chiluisa’s own immune and inflammatory response caused the damage.
The symptoms are probably not permanent, Spatz said, but it’s not clear how long they can last.
“It’s very difficult because we don’t know,” she said. “And we learn as we walk, and we learn from our patients and with our patients about their experiences. And it’s very worrying as a doctor not to feel like you’re ahead. “
Similarly, Lutchmansingh has no convincing explanation for why Chiluisa can become so short of breath that it has briefly been put on extra oxygen in two recent cases.
“Normal Edison’s lung function test is normal,” she said. “It simply came to our notice then. We are [examined] the usual already. Now we come to the part where we talk about the middle ground. “She said she was investigating whether the muscles that help the lungs breathe were working properly.
For Chiluisa and his family, the illness and the anxiety she caused, including financial matters, became debilitating. At one point in his recovery, he said his paid time was running out and Yale stopped paying him. Connecticut’s health insurance program is currently covered, but he believes Yale will eventually have to pay for the section because he was exposed to the workplace. Still, he worries that the financial burden will fall on him and his family.
A hospital spokesman declined to discuss Chiluisa’s work history.
Worried about reinfection, it is extremely unlikely that Chiluisa also feels uncomfortable working in the hospital, where he currently performs administrative duties. And since he still coughs, he also doesn’t like being among other people.Encouraged by his family, he is considering another career change.
“I am not psychologically ready. “I’m not physically ready,” he said. “Psychological is even worse than physical. You feel afraid, afraid to return to [emergency department].
“So my mental state is, ‘I don’t want to die.’ Say it like that. “