Syracuse, N.Y. – Shanica Echols was discharged from the hospital last spring after a two-week stay with Covid-19.
A year later, she still suffers lingering symptoms. She still gets winded on the stairs in her two-story house.
“I get exhausted climbing the steps,” said Echols, a traveling nurse. “I’ll climb the steps and then sit down in my room for a little bit before I do what I came upstairs to do.”
Greg Jenkins’s eyes water when he slices an onion. But he can’t smell it. Eight months after being diagnosed with Covid-19, Jenkins still has diminished taste and smell. He, too, has a hard time climbing the stairs. A singer, he’s had to relearn songs, inserting more breaths into his phrasing.
“I get short of breath really easy. I get fatigued really easy. My muscles just ache horribly,” said Jenkins, 58. “My sense of smell is shot. Once in a while I smell something, but I can’t tell what it is.
“I’m a long hauler.”
Potentially millions of Americans are long haulers like Echols and Jenkins. Six or more months after they became sick with Covid-19, they suffer the effects of “long covid,” with lingering symptoms such as shortness of breath, racing or irregular heart beats, fatigue, loss of sense of smell, and one of the most common and confounding symptoms, short-term memory lost labeled “brain fog.”
“It’s gotten to where I’ve had so many doctors’ appointments, I took a day off to go to an appointment, and that day I had no idea why I took the day off,” said Mark Hard, a therapist who spent nine days in intensive care last May with Covid-19. “I almost forgot to go to the appointment. It’s just something I would never do before.”
Long hospital stays and other illnesses, including the flu, can cause similar symptoms long after the injury has healed or the infection has resolved. What’s different with Covid-19 is the sheer number of people infected with the novel virus and the myriad ways in which it attacks disparate systems of the body in even previously healthy people.
“It’s something like I’ve never really seen before,” said Matt Bowman, a physical therapist who specializes in cardiovascular and pulmonary therapy at Upstate Medical University. “These people are very sick and it’s taking them a long time to recover.”
Long Covid is defined as a range of symptoms that can linger for weeks or months after the coronavirus infection clears, according to the Centers for Disease Control and Prevention.
“Long COVID can happen to anyone who has had COVID-19, even if the illness was mild, or they had no symptoms,” the CDC said.
More than 31 million cases of Covid-19 have been confirmed in the U.S., and the number is likely much higher given that many people were sick but never aren’t tested, and some people had the virus but never knew it because they had no symptoms.
It’s not known just how many Americans suffer from long Covid in the U.S., but it could be in the millions. Studies in other countries give clues to how widespread the syndrome might be.
In the most comprehensive study done yet, in China, the CDC said 76% of hospitalized patients had at least one symptom six months later. About 20% of people whose cases were mild enough that they did not need oxygen in the hospital still had decreased lung function six months later.
In a University of Washington study published in February, nearly one-third of Covid-19 patients had some lingering symptoms about six months after their infection. The most common symptoms were fatigue and loss of taste or smell. A study in the United Kingdom estimated that up to a third of Covid-19 patients had neurological or psychological symptoms six months after diagnosis.
Long-term symptoms are generally worst for the people who were the sickest and spent the most time in the hospital. That makes it difficult to untangle the direct effects of the Covid-19 infection from the effects of a long hospital stay. Regardless of the injury or infection that puts patients in intensive care, patients can from what’s known as post-intensive care syndrome. A week or two lying in an ICU is hard on the body and the brain, and the decline suffered in the hospital can take months to reverse.
Diagnosing long Covid is also tricky because the symptoms mimic those of other illnesses, such as chronic fatigue syndrome and dysautonomia, a disorder of the body’s underlying nervous system that controls breathing, heart rate, digestion and other unconscious functions.
One of the biggest complaints of long Covid patients is the memory loss, which can happen to those who were hospitalized and those who had a milder course of the disease.
“Many of the people who have brain fog weren’t in the hospital; they had bad Covid at home,” said Dr. Russell Silverman, a cardiologist who directs the heart failure clinic at St. Joseph’s Health. “They get short-term memory loss and inability to concentrate, or they can’t remember where they’re going or where they’ve been. We’re seeing it out six to eight months now.”
While the elderly are far more likely to die from Covid-19 than younger age groups are, long Covid seems to skew toward people between 30 and 60, Silverman said. He suggested one possible cause: The stronger immune systems of younger people can attack the virus with such ferocity that they cause a “cytokine storm,” where the body’s own antibodies cause much of the damage.
“Certainly the ones hospitalized with a cytokine storm, and the massive release of adrenalin and epinephrine have a higher incidence of long haul Covid symptoms,” Silverman said.
Long Covid will be with us for a while. Even as millions of Americans are being vaccinated, tens of thousands of people continue to contract the virus every day.
“I think we’re going to be dealing with this for a long time,” Silverman said. “It looks like six to eight months before we see this start winding down, but as people continue to get Covid this is still going to be a lingering problem.”
Echols, 46, fell ill while working in a New York City hospital in the early days of the pandemic. She returned home and was admitted to Upstate, where she ended up in the ICU in April 2020. Doctors wanted to put her on a ventilator, but she refused, fearing she would never come off of it alive. Instead, she fought the illness with her faith and family.
One night in mid-April, isolated in a Covid ward and struggling to breath, Echols told her mother over the phone she was afraid she was going to die.
“I asked her to call my Aunt Sheila in Ohio,” Echols said. “Both of them spoke life to me, that I was a child of God and that I would come through this. We prayed on the phone and hung up.”
She spent 12 days in the ICU. For much of that time she lay on her stomach – that position puts less pressure on the lungs – and finally improved enough to be discharged.
“I came home on 3 liters of oxygen,” she said. “I had no endurance. I couldn’t do anything without getting overly tired.”
Echols, who has three children and had recently built a house in Cicero, got back to work in July. She pushed herself to improve her lung function enough so she didn’t need oxygen.
A year later, she’s much better, but has a long way to go. She forgets things more than she used to, so she texts herself information she needs to remember later. She still has moderate lung function impairment, and doctors have told her it could take another six months to a year until her breathing is no longer labored. She said she needs surgery for another condition but has had to postpone it indefinitely.
“I can’t be cleared for surgery because they’re not sure if my lungs are going to work again if they intubate me for surgery,” Echols said.
Doctors have recommended she lose some weight, so she’s joined the gym and has even signed up for a kick boxing class. A traveling nurse, Echols is now working 12-hour shifts at St. Elizabeth’s Medical Center, in Utica.
Echols has worked in Covid-19 wards and with other patients with impaired breathing.
“Emotionally it’s hard for me, because I know exactly what they’re going through,” she said. “As time went on, I got stronger and I was a better advocate for patients.”
Jenkins, of Rome, got sick in early October. His fever was out of control for 11 days, his legs were weak and the persistent headache was “maddening.” By the time he was rushed to Upstate, one of his lungs had collapsed. Doctors reinflated the lung and gave Jenkins a battery of Covid-19 treatments, including plasma antibodies and steroids.
He was discharged after two weeks, but six months later he’s still struggling. The guy who climbed mile-high Mt. Marcy six times now struggles on flat ground.
“I’m an outdoorsman. In the fall I would normally be climbing trees to hunt and carrying all this gear,” said Jenkins, 58. “Now I can go fishing, but I get huffing and puffing just walking on a level area.”
He used to entertain in nursing homes, covering the greats like Frank Sinatra and Perry Como. He’s relearning songs, adapting his breathing pace to his diminished lungs.
“‘New York, New York’ is a big song, and it takes a lot of breath to do it,” he said. “When I’m trying to hold those notes out, it strains me completely. Before, it was easy.”
He’ll finally have his first post-Covid gig later this month, at the Brookdale assisted living center in Clinton, Oneida County.
Jenkins doesn’t think his condition will improve much, if at all. Doctors told him last year that his progress would probably end by April 1.
“I have to be grateful for what I have,” he said, “and I have to accept this is as good as it’s going to get.”
Mark Hard’s battle began in late April 2020, when he felt fatigued for several days. While riding out his illness at home, his temperature spiked to 102 degrees and his oxygen saturation level dipped below 60%. Normal is above 90%.
He was on oxygen in the ICU for nine days, and still needed oxygen when he got home. Today, nearly a year after his discharge, he’s still slightly short of breath.
“I’ve got some lung damage that can’t be reversed,” he said. “I was healthy before this, and now I still have a little shortness of breath, and I’ve got problems with my lungs and heart disease of some sort and the cognitive stuff going on that I still struggle with.”
While Hard’s short-term memory often fails him, his brain can still do the heavy lifting. He continues to work full-time as a therapist, and he recently passed the four-hour test to become a licensed clinical social worker.
He said he’s going to keep pushing himself physically and mentally, and hopes to be back to where he was a year ago. He has asked his doctors if he’ll ever return to 100%.
“They’d say, ‘You will either return to baseline, which means normal, or you’ll have a new baseline that’s less than you were before,’” Hard said. “I would always reply, ‘I don’t want the new baseline, I want the old baseline, and I’m going to do everything I can to get there.’
“And I’m still saying that.”
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