The illness was to last for three weeks, doctors told her.
But weeks four to six of COVID-19 were the worst for Holly MacDonald. Her low-grade fever turned into an all-around fatigue. She began to have trouble speaking.
And as she got up, her legs and feet turned purple.
“I wanted to go too far and then I had to stay in bed for three days,” said MacDonald, 29, who lives in Crown Heights. She had to take administrative leave from her job in a nonprofit where she builds social media campaigns.
A month after becoming ill in early March, MacDonald was back in the ER, frustrated as she tried to convince her doctors that in the second month she was being run over over what she, she was told, was a respiratory virus in three weeks.
She is still not fully recovered. MacDonald is one of up to 70,000 New Yorkers struggling with unexplained long-term symptoms of COVID-19, according to a series of estimates from several doctors and hospitals in New York City contacted by THE CITY.
“The hidden number could be more,” said Dr. Zijian Chen, who heads the Mount Sinai Center for Post-COVID Care. “We’re looking at patients who are still testing positive every day, so this is a population that will continue to grow.”
The growing number of so-called long-range fighters underscores what patients and doctors describe as a growing struggle on several fronts.
Patients who experience symptoms long after three weeks are sometimes more severely affected by the physical vandalism of the virus than when they first received COVID-19.
In some cases, patients say their doctors do not believe in them. It can add to the struggle for those seeking to have their medical expenses covered – especially after losing their jobs due to their illness or the pandemic slump economy.
The stories of some New York COVID-19 survivors have challenged the early perceptions of COVID-19 as a three-week illness.
They are the 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 gather what it means to live with the long-term illness.
Chen came up with the 70,000 estimate, he said, based on available data from the New York City Department of Health and the U.S. Centers for Disease Control and Prevention. His center, designed to treat “long-distance sufferers,” has already encountered 400 such patients.
These “long COVID” cases, as the Mount Sinai Center describes them, seem to occur randomly – there is no demographic category that is more likely than another to be affected.
Patients report fatigue, shortness of breath and difficulty thinking clearly. In some cases, the symptoms arrived months after the worst of COVID diseases were over.
“This disease can be very devastating,” Chen said. “And many of the symptoms are not easily explained. It is not something we have established knowledge about. ”
Viral infections such as COVID-19 can cause post-viral syndromes – a month-long phenomenon characterized by constant fatigue and difficulty sleeping.
One of the few roadmaps to navigate the aftermath of COVID-19 is the 2002 SARS epidemic. Studies have shown that some patients developed “Chronic Post-SARS”, a syndrome that lasted up to 18 months.
It feels “almost like a concussion,” MacDonald said. “‘Any kind of activity – mental or physical – triggers me to headaches that last three days.”
MacDonald suspects that her COVID has progressed to postural orthostatic tachycardia syndrome, also known as POTS, which can sometimes stem from viral infections. These are less common, but they explain more severe symptoms like her purple feet.
Hard to return to work
Dr. Aluko Hope, a critical care physician treating COVID-19 patients at Montefiore Medical Center in the Bronx, likened life with long-term illness to “living in a new body.”
“It’s not like you’ll fix it with a little pill and it’s all going to disappear and you’ll shut up,” Hope said. “You will have to deal with several visits to different doctors. It’s much more complicated. ”
At Montefiore, many of Hope’s COVID-19 patients say they feel they have been knocked out of their normal rhythms.
“A lot of them want to talk about just not being who they are,” Hope said. “It’s so completely inconsistent with how they lived their lives before this.”
MacDonald said she’s lucky because she works at a computer most of the day.
“If I worked a physical job, forget it,” MacDonald said.
In early March, Maria Diaz became one of the first New Yorkers known to have entered into COVID-19.
Diaz, who teaches at Brooklyn’s Poly Prep Country Day School, left his job on March 3 with a 105-degree fever. Well into the summer, she reported fever every few days as well as chronic fatigue.
What confuses her is that doctors initially diagnosed her case as “mild”.
“What I was told was that this was an upper respiratory tract infection,” said Diaz, 31. “But I had all these other symptoms.”
In some cases, the persistent symptoms were worse than the original ones.
“Sometimes it’s the people who have the milder versions of this infection who end up having chronic versions,” said Lauren Stiles, an assistant professor of neurology at Stony Brook University who studies autonomic disorders.
Cost deadlines Loom
The possibility of losing work and health insurance is doubly problematic for patients who have been in and out of hospitals since the pandemic began.
In March, many private insurance companies committed to waiving patient shares of the cost of treatment with COVID-19. These protections mean no spending on pockets for people with insurance. To qualify, a hospital must code a patient’s bill as COVID-19 related, otherwise insurance companies will not take it.
For some providers, such as Aetna, the protection expires on 30 September. Aetna did not respond to requests for comment.
Others, like Empire BlueCross BlueShield, recently extended the deadline to December 31st. A spokesman said the insurance company had identified nearly 2,000 patients with COVID-like symptoms through its “Post Acute-Care Program”.
“We are closely monitoring the pandemic and monitoring the needs of our members, especially those recovering from COVID-19,” said Dr. Craig Hersh, Chief Medical Officer of Empire BlueCross BlueShield.
Chen called the issue of insuring patients with long COVID a “major concern.”
“Patients tell us that their insurance in itself expires, either through their work due to job loss or because they are on COBRA,” Chen said. “Depending on how this pandemic turns out and patients’ ability to work, their ability to be cared for is really affected.”
And long-term symptoms are still not widely seen as part of the disease, partly because some patients, especially those infected in the early days of the crisis and at altitude, were never tested for coronavirus. Many “long-term sufferers” say that they have also tested negative for antibodies if their original disease is despite their symptoms.
“What is really challenging is [the patients] look completely normal, ”said Stiles, who himself has an autonomic disorder.
“It is sometimes difficult for doctors to understand. And it does not lead to much compassion for [patients]. ””
Both Hope and Chen said they were concerned about New York hospitals’ capacity to treat long-distance carriers as the number of patients they treat continues to grow. Mount Sinai’s center is struggling to staff enough doctors to meet patient demand, Chen said.
“It will be a very, very big burden on the health care system, on the economy,” Chen said, “and at some point it will be unsustainable.”
Luca Powell is a J-Corps Fellow from the Craig Newmark Graduate School of Journalism at CUNY who participates in “MISSING THEM, ”THE CITY’s ongoing collaborative project to remember every New Yorker killed by COVID-19.