The disease was to last for three weeks, doctors told him.
But four of the six weeks of COVID-19 were the worst for Holly Macdonald. His low-grade fever turned into an all-round fatigue. He started having trouble speaking.
And when she stood up, her legs and feet turned purple.
McDonald said, “I’ll go too far and then I have to stay in bed for three days.” She had to take administrative leave from her job at a non-profit institute where she creates a social-media campaign.
A month after becoming ill in early March, McDonald was back in the ER, frustrated as he tried to convince his doctors that he had been fired in his second month, he was told he was three weeks old. There was respiratory virus.
She is still not fully recovered. According to a range of estimates provided by several New York City-area doctors and hospitals contacted by CITY, McDonald’s is one of 70,000 New Yorkers struggling with unexplained long-term symptoms of COVID-19.
“The hidden number may be higher,” Dr. Said Zijian Chen, who directs the Center for Post-Kovid Care of Mount-Sinai. “We are seeing patients who are still testing positive day-to-day, so this is a population that continues to grow.”
The increasing number of so-called long-skinned people underscores what patients and doctors describe as a growing conflict on many fronts.
Patients who experience prolonged symptoms after three weeks are sometimes more prone to physical outbreaks of the virus than when they first contracted COVID-19.
In some cases, patients say, their doctors do not believe them. This can add to the struggle for those seeking to cover their medical expenses – especially after losing work due to their illness or an epidemic-slam economy.
Long lasting symptoms
The stories of some COVID-19 survivors from New York have challenged early concepts of COVID-19 as a three-week illness.
They are stories of runners who now need wheelchairs and yoga teachers with debilitating fatigue. Discharged from the hospital, they now find support in a host of online support groups, where they try to piece together, which means living with the disease.
Chen said with a 70,000 estimate, he said, based on data available by the New York City Department of Health and the US Center for Disease Control and Prevention. His center, which is designed to treat “tall-skinned people”, has already encountered 400 such patients.
As described by Mount Sinai Center, these “long-COVID” cases appear randomly – there is no demographic category that is more likely to be compared to the other.
Patients report fatigue, shortness of breath, and difficulty thinking clearly. In some cases, the symptoms come months after the worst of the COVID illnesses.
“This disease can be very devastating,” Chen said. “And a lot of the symptoms are not easily explained. This is not something on which we have established knowledge.”
Viral infections such as COVID-19 can cause the subsequent viral syndrome – characterized by persistent fatigue and trouble sleeping.
One of the few road maps to navigate the consequences of COVID-19 is the SARS epidemic since 2002. The study found that some patients developed “chronic post-SARS,” a syndrome that lasts for 18 months.
McDonald said, “It’s almost like a treaty”. “‘Any kind of activity – mental or physical – turns me into a headache that occurs in the last three days.”
McDonald suspects that her COVID has developed into a Postural Orthostastic Tachycardia Syndrome, also known as POTS, which can sometimes stem from viral infections. These are less common, but they explain more severe symptoms, such as its purple feet.
Hard to return to work
Dr. Aluko Hope, a critical care physician at the Montefor Medical Center in The Bronx treating COVID-19 patients, compared life with a new body to life sickness.
“It’s not like you’re going to fix it with a small bullet and it’s all going away and you’ll be honky-dory,” Hope said. “You have to deal with multiple visits with different physicians. It is much more complicated. “
In Montefiore, many of Hope’s COVID-19 patients say they feel as if they have been pushed out of their normal rhythm.
“A lot of them will just talk about not being there,” Asha said. “It is completely inconsistent with how they lived their lives before that.”
McDonald said she is lucky because she works at the computer most of the day.
“If I was doing a physical job, forget it,” Macdonald said.
At the beginning of March, Maria Diaz became one of the first New Yorkers to be contracted Cauveau-19.
Diaz, who taught at Poly Prep Country Day School in Brooklyn, quit work on March 3 with a 105-degree fever. Well in summer, she was reported to be suffering from fever every few days, as well as chronic fatigue.
What’s wrong with her is that doctors initially diagnosed her case as “mild”.
“I was told it was an upper respiratory infection,” said 31-year-old Diaz. But I could see all these other symptoms. “
In some cases, the permanent symptoms were worse than the initial ones.
“Sometimes it happens to people who have minor versions of this infection, which eliminates older versions,” said Lauren Styles, an assistant professor of neurology at Stony Brook University who studies autonomic disorders Huh.
Cost deadline loom
The probability of losing work and health insurance for patients living in and out of hospitals is twice as problematic since the epidemic began.
In March, several private insurers committed to waive patient shares of costs for COVID-19 treatment. Those protections mean there are no out-of-pocket expenses for those with insurance. To qualify, a hospital is required to code a patient’s bill as COVID-19-related, otherwise insurers will not take it.
For some providers, like Aetna, those protections expire on September 30. Aetna did not respond to requests for comment.
Others, such as Blue Cross Blue Shield, have recently extended that deadline to December 31. A spokesperson for Blue Cross Blue Shield said the insurer had identified about 2,000 patients with COVID-like symptoms through its “post acute-care program”.
“We are closely following the epidemic and specifically monitoring the needs of our members recovering from COVID-19,” said Dr. Craig Harsh, chief medical officer of Empire Bluecross Blueshield.
Chen called the issue of insuring long-COVID patients a “major concern”.
“The patients told us that their insurance was expiring on their own, either because of loss of work through their work, or because they are on COBRA,” Chen said. “Depending on how this epidemic changes and patients’ ability to function, their ability to care for them is going to be really affected.”
And long-term symptoms are still not widely seen as part of the disease, as some patients, especially those infected early in the crisis and at its height, were never tested for coronavirus. Many “long hauls” say they have tested negative for antibodies in their early illness, despite their symptoms.
“What’s really challenging [the patients] Looks completely normal, ”said Stiles, who has an autonomic disorder.
“It is difficult for doctors to understand. And it does not cause too much compassion [patients]. “‘
Both Hope and Chen said they were concerned about the ability of hospitals in New York to treat long-skinned patients as the number of patients they treated was steadily increasing. Chen Sinai said that the Mount Sinai center struggles with enough doctors to meet patient demand.
“It’s a very, very big burden, for the health system, for the economy,” Chen said, “and at some point, it will be uncertain.”
Luca Powell is a J-Corps Fellow from Craig Newmark Graduate School of Journalism in CUNY, participating in it.missing them, CITY’s ongoing collaborative project to remember every New Yorker killed by CITY-19.