When Jake Goldenstein tested positive for COVID-19 in April, he thought beating it would be a breeze.
He was 20 years old, athletic and had zero pre-existing conditions.
Five months later, he still can’t walk down the street without becoming completely winded and is plagued with debilitating headaches, digestive issues, congested sinuses and a racing heart.
“They gave me all types of medications. I was on a nebulizer, I was on multiple inhalers, they gave me multiple [antibacterial] medications, literally all types of medications,” Goldenstein told The Post. “None of them really seem to help.”
The Rockland County man — an avid hiker and baseball player — first developed a blinding headache on April 3 during his shift as a package handler at FedEx and tested positive for COVID-19 two days later.
“I was one of those stubborn kids thinking that this wouldn’t happen to me … I just thought if I were to get it, I would get like a common cold,” Goldenstein rasped.
“But then it actually hit me the worst way. I got literally all the symptoms basically and I’m still dealing with [them].”
And he is hardly alone.
As states across the US tackle their initial wave of coronavirus infections, New York is facing a new kind of crisis in the backdrop of a flattened curve: how to handle COVID-19 survivors with long-term symptoms.
They call themselves “long haulers” and they’re suffering from a myriad of symptoms, including shortness of breath, fatigue, body aches and a variety of cognitive issues after their initial infections clear up. They say they’re living in bodies they no longer recognize.
“I’m not the same girl that I was before COVID,” said Denise Federico, a 32-year-old Big Apple nurse who’s been battling a mixed bag of brain fog, fatigue, headaches and chest pain for almost five months. “This is not the same body I had on March 25th.”
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In late July, the Centers for Disease Control and Prevention acknowledged the prevalence of COVID-19 long haulers for the first time. In a survey of 292 people who tested positive for the virus, the CDC found 35 percent hadn’t returned to their “usual state of health” two to three weeks after the test. Twenty percent of those respondents were between the ages of 18 and 34 and had no previous chronic medical conditions.
The Post spoke with 11 New Yorkers who all tested positive for the virus or for antibodies, have since tested negative, but continue to be sick with marginal, if any, improvements.
They were never admitted to the hospital and considered themselves in good health before catching the bug.
“I’m terrified … it just doesn’t go away,” said Martha Barrera, a 51-year-old bank manager from Maybrook.
Since March 15, Barrera hasn’t had one day without symptoms. She’s dealing with lingering shortness of breath, back pain, “unbelievable” fatigue, hair loss, neuropathy and was recently diagnosed with diabetes, which her doctors say was brought on by COVID-19.
“It has changed my life completely,” Barrera said. “I work as long as I can work and then I just have to ask to go home and then I go to sleep, like there’s nothing much else I can do for the rest of the day.”
Helen Thompson Buffong, 46, also hasn’t had a single day without symptoms since they began on April 2. She’s lost her ability to care for her two young children, her career is on hold, and she’s suffering from fatigue, neuropathy, shortness of breath, internal vibrations and body pain.
“It’s torture,” the Brooklynite told The Post.
“It’s the hardest and scariest thing I’ve ever had to do.”
Olga Z., a bank examiner from Brooklyn, hasn’t been the same since March 23.
“I feel like an old person. I’m only 46,” she said. Her body aches, coupled with hot flashes and arthritis, are debilitating and her hair has been falling out in clumps.
“I don’t wish this on my worst enemy,” she said. “This was absolutely the worst experience of my life.”
Alexandra Plazas-Herrera, 41, said she suffered bleeding from her nail beds a few months after catching COVID-19 and her skin was peeling off her face.
“It was super weird, like horror movie stuff,” said the Manhattan woman, who believes she caught the bug while in Paris for Fashion Week.
The business owner has also been plagued by a lingering fever, fatigue, persistent brain fog and is seeing issues with her concentration and coordination.
“I cut myself four times cooking in like the last couple of months, I never did that before but it’s just like I’m not coordinated [anymore]. I’m always dropping things, breaking things, hurting myself,” the brand consultant said.
Federico, the city nurse, has also been experiencing severe brain fog and at times can’t remember simple words or food items for a grocery list.
“It’s very scary for somebody that’s 32 years old to not be able to think of words,” said Federico.
“I’m like, what did this thing do to my brain?”
Kristen Calabrese, a 32-year-old from Staten Island, said some days she feels fine and other days, she can’t get out of bed.
“It’s actually scary that it’s so variable because you kind of don’t know like what you’re waking up to the next day,” said the cochlear implant audiologist, who led an active life and had “great” health pre-COVID.
“You kind of feel defeated.”
Many of the long haulers have sought solace in Facebook groups for people with COVID-19 like the Survivor Corps page — a resource Barrera called a “lifesaver.”
Trying to seek medical care for the lingering symptoms is almost as difficult as living with them, the long haulers said. They repeatedly sit for batteries of tests only to be told everything looks normal.
“[A doctor] basically told me to like suck it up … He just brushed me off, he’s like ‘You have a mild case, take Tylenol,’” Federico said.
Plazas-Herrera was told the symptoms were all in her head.
“It made me feel crazy and alone a lot because it was always ‘Take Tylenol, push fluids, I think you’re depressed’ or ‘You’re having anxiety’ and it’s like no, I’ve had anxiety. I know what anxiety is,” she insisted. “Doctors for the whole time have been kind of brushing it off.”
Barrera’s cardiologist told her, “We don’t know what to do with you post-COVID people.”
“My primary doctor said to me, ‘You just need to go back to your normal life and all of this will go away.’ He said, ‘Right now it’s your anxiety’ and he realized, ‘Oh no, wait, you have diabetes too.’ It’s an awful feeling,” Barrera recalled.
“You’re relying on prayers and home remedies to get you through. It’s traumatizing.”
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Dr. Zijian Chen, medical director for Mount Sinai Hospital’s Center for Post-COVID Care, runs one of a handful of centers dedicated to treating patients with long-term symptoms.
Following an initial intake, patients are sent to various specialists who run a series of tests and track symptoms. Until they find a cure, they’re trying everything from functional medicine to music therapy, anything to get patients feeling better, Chen said.
Data coming from the 300 or so patients is shared across the center’s team of doctors who are conducting multiple simultaneous studies. While there’s a lot of information coming in, there are still no answers.
“This new disease of post-COVID exposure and these long-term sequelae, it’s completely new, like our training never prepared us to handle this,” Chen said.
“These are previously normal, healthy people, and for them to get infected with this and then have these long-lasting effects that they can’t do anything about is extremely frustrating.”
There’s a few theories about what’s causing the long-term symptoms, and the one Chen believes the most is an overactive immune response causing damage to the organs.
“Because some patients have a more aggressive immune response than others, that aggressive immune response can do more damage to those organs in some people and less in other people, and that damage is long-lasting and precipitant and that’s leading to their persistent symptoms,” Chen said.
“If it’s correct, these symptoms can last for months and if it’s permanent damage to the organs due to the initial infection, this could be lifelong.”
Using the CDC’s study as a model, as many as 1.8 million Americans could have long-haul symptoms in the coming months and years — a crisis no one is prepared for, Chen said.
“Imagine what 9/11 did to New York City and the health burden it had. Multiply that by a hundredfold,” the doctor said.
“The country as a whole is having such a hard time taking care of the increasing number of sick people that we’re not at the stage where we can focus all our energy on recovery … We need more doctors and more support in being able to reach and see all these patients.”
As frustrating as it is for patients to face a mystery secondary illness that’s attacking their body, it’s equally difficult for the doctors tasked with treating them.
“We just want to do our best and we can’t,” Chen said.
“It’s devastating,” added Dr. Lindsay Lief, a pulmonologist and director of the medical ICU at Weill Cornell Medicine and NewYork-Presbyterian.
“I just feel so bad for my patients. They’re so frustrated and so scared and you know, they may have sought out three doctors, they may have gone to two different hospitals, they did a video visit, they did an in-person visit, they had all these tests and none of us can give them like a straight answer,” said Lief, who runs the hospital’s post-intensive care recovery unit.
“There’s a sense of guilt, like I don’t want them to feel just overwhelmed with frustration, in addition to their not being able to breathe.”
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In a new world hyper-focused on hospitalizations and death rates associated with COVID-19, the long haulers can’t help but feel left out of the story.
“People like me, we really feel abandoned, it’s like if you didn’t have bilateral pneumonia and had to be admitted you’d be fine but no, we’re not fine, we’re suffering,” railed Thompson Buffong, who’s receiving care at Mount Sinai’s center.
Lief added, “A lot of patients who survived COVID, whether they were hospitalized or not, have impairments that are going to impact them for weeks or months or for the rest of their lives.”
“Survival doesn’t mean intact and doesn’t mean you are the person you were before. If you used to be a marathoner and now you can’t walk up the two flights of stairs to your apartment, that’s survival,” the doctor went on.
“So survival is really one outcome, but it is not the only important one.”
For Calabrese, who’s also receiving care at Mount Sinai, the long-term symptoms and the uncertainty over her health at times felt worse than dying.
“That’s a very strong statement, but quality of life is something that’s so important to so many people,” she said.
“The chance of catching it and actually dying shouldn’t be the fear. It should be the fear that you catch this virus and then you have to live with the consequences … These symptoms are what you should be afraid of and how life-altering they are.”