Debbie Rifenbury first felt sick from COVID-19 in March 2020. More than 14 months later, she still has trouble breathing, feels weak and often can’t sleep.
Rifenbury is one of many Long Islanders struggling with the effects of COVID-19 months after they contracted the virus. Scientists are unsure what is causing the lingering symptoms, how to prevent and treat them, why some people get them and others don’t, and how long the effects may last. The federal government is spending $1.15 billion over the next four years on research.
"I’m completely devastated," said Rifenbury, 62, of Oceanside. "I used to be a powerhouse. I used to be independent. I used to be me, but I’m not me now."
Doctors noticed during the first COVID-19 wave in spring 2020 that symptoms were not going away for many patients, even after they no longer tested positive for the virus. More than a year later, it is increasingly clear that many people of all ages, including children and those who had only mild cases of COVID-19, are faced with sometimes debilitating symptoms that drag on for months, with uncertainty about whether they'll ever end.
Rifenbury, who spent 17 days in Mount Sinai South Nassau hospital with COVID-19 last spring, said she gets winded even while walking a block or two. She has improved slightly over the past several months, but her doctor recently told her that "my lungs may never get better."
"It’s been a year already," she said. "It’s crazy. I never thought I’d still have this."
What to know
Months after contracting the coronavirus, many Long Islanders continue to struggle with the effects of COVID-19.
A review of 45 studies on long-term coronavirus effects shows that fatigue, shortness of breath and sleeping disorders are the most common lingering symptoms. Another study shows that even many people who had mild cases of COVID-19 have long-term effects.
Scientists don’t know what is causing the symptoms, how best to treat them and how long the effects will last.
In a review of 45 studies published May 26, Stanford University researchers found 73% of study participants had one or more of 84 persistent symptoms at least 60 days after their initial coronavirus infection or symptoms, and that the persistence continued for six months in studies that followed participants that long. Fatigue, shortness of breath and sleeping disorders were the most common symptoms, with many people also reporting loss of memory, difficulty concentrating, loss of sense of taste and smell, fevers and chest pain. Most participants had been hospitalized for COVID-19, according to the review, which was posted on JAMA Network Open.
A study published in February focused primarily on adults who initially had mild symptoms from COVID-19. Three to nine months later, 30% still had symptoms. That study also was published on JAMA Network Open.
Doctor says fatigue lasted for months
For Dr. Jessica Cohen, 38, an attending physician at North Shore University Hospital in Manhasset, fatigue from the disease lasted for months after she first got sick in March 2020, as did a rapid heart rate that sometimes left her sweaty, shaky, tired or dizzy, and at risk of passing out.
"I feel like I’m having a huge adrenaline rush, but not in a good way," said Cohen, who also is Northwell Health’s director of evidence-based clinical practice in the system’s department of clinical transformation.
She eventually was diagnosed with postural orthostatic tachycardia syndrome, which affects the nervous system and blood circulation and can cause a rapid heartbeat, especially when the body is upright.
Cohen improved through breathing exercises, an aerobic and weight-training regimen of two to three hours a day to build up and maintain her heart function, and greater intake of salt to increase blood volume. But there have been flare-ups, the latest three weeks ago after a shoulder injury sparked inflammation and left her unable to exercise as much. It brought back the rapid heart rate, some fatigue, headaches and gastrointestinal problems.
"Three weeks ago, I was actually fantastic," Cohen said. "I was walking without issues, my heart rate was not going up very high, [and] I was on a Peloton [stationary bicycle] for my exercise. I was probably in better aerobic shape than I’ve been in years because of how much exercise I’ve had to do."
She has been trying to build herself up again by slowly increasing her exercise on a recumbent bicycle so her body can adjust to being back on the upright Peloton.
"What’s frustrating is that it’s constantly 10 steps forward and five steps back," Cohen said.
Doctors often can’t give patients a prognosis on recovery, said Dr. Sritha Rajupet, the primary care lead for the Stony Brook Medicine Post-COVID Clinic in Commack, which has seen more than 400 patients since it opened in November.
"We’re trying to use all the tools modern medicine has available, but sometimes we still don’t have the answer," she said. "This is a new condition and we’re still learning so much about it."
All but a few clinic patients have seen some improvement, with fatigue "the slowest to improve," Rajupet said. But few are entirely back to normal, and many are on leave from their jobs or have otherwise seen their lives drastically constrained by their symptoms, she said.
At Northwell Health, which has its own post-COVID-19 program, doctors are conducting a clinical trial to determine how best to treat long-term coronavirus patients who have respiratory problems such as shortness of breath, said Dr. Gita Lisker, a pulmonary disease doctor at Northwell.
"Do we watch and wait, especially if there’s been a slow improvement, and just hope the body eventually will take care of it" or give them steroids that carry the risk of negative side effects? she asked.
'Had to retrain my body to swallow again'
Before Nassau County resident Dr. Scott Krakower got sick from COVID-19 in April 2020, he swam, surfed and regularly went on miles-long walks, but for months afterward, he said he "could only go a block at a time without sitting down."
Krakower, 41, a psychiatrist at Zucker Hillside Hospital in Queens, didn't begin slowly adding back solid foods to his diet until August, because they were causing him to lose his voice and were difficult to swallow.
"I had to retrain my body to swallow again" and was in speech rehabilitation until September, Krakower said.
Today, he still has a heart condition that may have been exacerbated or caused by COVID-19. And occasionally, after exerting himself by swimming or talking too much, symptoms return.
During a conversation a few weeks ago, "I started coughing and almost choking, and I couldn’t talk," he said.
His voice came back after 10 minutes. But, he said, "It is very scary. You can be doing really, really good and then out of nowhere it happens."
Debby Carr, 54, of East Northport, a patient at the Stony Brook post-COVID clinic, contracted the coronavirus in December and had a fever and persistent cough for 135 days.
Her ears constantly ring, she’s lost much of her hair, and some foods have a metallic taste. Her legs are weak, and they’re numb from her feet almost to her shins.
She’s also frequently fatigued and only can go up five or six stairs before "I literally have to use the railing to help propel me up, because I don’t have the strength in my legs to do a full flight of stairs yet."
Still, she is less tired and more mobile than several weeks ago, and on Tuesday she returned to work as a crossing guard — although she's not ready to go back to her other job, as a bartender, because of the longer shifts on her feet.
Carr wonders how long her symptoms will last and if they’ll ever go away — and if COVID-19 has "affected me in ways I may not know yet."
"The unknown is the scary part," she said, "not knowing what could possibly happen because they don’t know enough about this virus and the effects it could have on everybody long term."