Runner, 29, with Long COVID Went from Half Marathons to Months in a Wheelchair: 'It Was So Scary'
Runner, 29, with Long COVID Went from Half Marathons to Months in a Wheelchair: 'It Was So Scary'
"I thought I was living a slow progressive death. We had no idea, and neither did the doctors. Nobody could tell me if I was going to get better or not," Catie Barber says
By Wendy Grossman KantorUpdated February 17, 2022 10:35 AM
Catie Barber has been running since she was very young, and started running half-marathons in 2013. The 29-year-old registered dietician cooked nutritious meals, hit the gym for two hours a day, and loved hiking and biking. "Everything I did revolved around being active," she tells PEOPLE.
In March 2020, Barber was working at a nursing home in the Hudson Valley when patients started getting sick. By the end of the month, she and her coworkers started feeling symptomatic — Barber had a headache, felt like she had a cold and was exhausted. She came home from work and went right to sleep, "which is not like me," she says.
She didn't have a cough or a fever, so she didn't think she had COVID. But on April 3, 2020, she tested positive.
"My initial COVID case was very mild," she says. "I just had your standard COVID, you know, the body aches, the fatigue, the headache. Lost sense of taste and smell. Very minimal symptoms."
For more stories about Long COVID, pick up this week's issue of PEOPLE, on newsstands Friday
After two weeks, she was feeling better and went back to work. But three days later, she was face-down on the couch and felt sicker than before.
She kept trying to return to work and failing. "Every time I would go back, I would just be too tired," she says.
"One of the times I went back, I tried to do a standard tube-feeding procedure and I couldn't remember what to do. I had no idea. And I was like, 'I'm going to kill someone. I can't be doing this.' I had to call my supervisor and say, 'You have to take over. I don't know what I'm doing.' The brain fog was just so bad. So with three failed work attempts, I just kept getting worse and worse."
On the morning of May 4th, she was with her husband Dave Barber at their home in Saugerties, NY, lying on the couch when she told him, "I can't move."
Her husband took her to the emergency room. "It was so scary," Catie says. "I just had tears rolling down my face. I'm like, 'I am going in here to die.' "
The ER doctor was concerned when he called Dave because Catie looked very sick, but he couldn't determine what was wrong.
"You can hear it in his voice he's beside himself," remembers Dave, 32. "He says, 'Something's clearly wrong here. I want to admit her, but I don't have anything to admit her for.' He goes, 'All her blood work came back and it's flawless. It's some of the best blood work I've ever seen.' Which makes sense, because she was training for a half-marathon."
Without a reason to admit Catie, insurance wouldn't cover her stay. Her husband asked the doctor if she was dying, and he said no. She was released and sent back home. Their parents took turns staying with her during the day, while Dave worked.
"I was stuck in the apartment. Because the only way I could leave was if my husband carried me," she says. "It was a very, very depressing time. I cried myself to sleep for months."
Through the Facebook group Survivor Corps, Catie learned about the Mount Sinai Center for Post COVID Care in New York City, but she couldn't get an appointment until September.
"I thought I was living a slow progressive death. We had no idea, and neither did the doctors. Nobody could tell me if I was going to get better or not," she says.
By late August, Catie wasn't able to walk at all and was wheelchair bound.
She had her initial consult at Mount Sinai in early September. "They told us flat out, 'Listen, we don't have all the answers, we're still learning, too, but we know what you're going through. We have hundreds of thousands of people like you,' " Dave remembers.
Doctors suspected Catie's COVID had caused Postural Orthostatic Tachycardia Syndrome (POTS), a condition which affects blood flow. The couple felt relieved to have an explanation.
"Up until that point, nobody took us seriously. They thought that it was anxiety," she says.
Catie Barber in the hospital
Two days before her follow-up appointment with a cardiologist at Mount Sinai, Catie woke her husband and told him she thought she was having a heart attack.
She showed him her Apple Watch, which charted her heart rate at 186 beats per minute. She told him goodbye — and said she wanted him to find another woman who could be his wife.
He called 911, and she started violently convulsing — it looked like she was having a seizure, her husband remembers. Her head and feet were slamming so hard against the ground, the next door neighbor called 911 too.
At the hospital, the ER doctor was familiar with long COVID, and made sure she didn't have a heart attack before releasing her so that she could make it to her follow-up appointment in New York.
At Mount Sinai, a cardiologist confirmed her diagnosis of severe POTS and Dysautonomia.
She started a high salt, high liquid diet, compression stockings, physical therapy, and breath work. Her progress was slow, but she was determined.
By January, she could stand again. In March 2021 she was able to stop using her wheelchair, and in April, she went back to work — armed with new empathy and understanding for her wheelchair-bound patients. It was hard working in the same place where she got sick, so in October, she started a new job as a dietician for the New York State's Office for Developmental Disabilities. She's continued improving, little by little, and can now walk a mile.
"I'm a different person now," she says. "I try not to think about, 'Well, I was running 13 miles before this.' I try to think about how far I've come from the worst of the worst of this. That keeps me going."
She shares her story hoping to advocate for the other COVID-19 long-haulers.
"I know that there are thousands, if not millions, of long-haulers struggling around this world," she says. "There is hope. I try to tell people, 'Just keep the hope.' Progress is so, so incredibly slow, but you will get there."
Runner, 29, with Long COVID Went from Half Marathons to Months in a Wheelchair: 'It Was So Scary'
"I thought I was living a slow progressive death. We had no idea, and neither did the doctors. Nobody could tell me if I was going to get better or not," Catie Barber says
By Wendy Grossman KantorUpdated February 17, 2022 10:35 AM
Catie Barber has been running since she was very young, and started running half-marathons in 2013. The 29-year-old registered dietician cooked nutritious meals, hit the gym for two hours a day, and loved hiking and biking. "Everything I did revolved around being active," she tells PEOPLE.
In March 2020, Barber was working at a nursing home in the Hudson Valley when patients started getting sick. By the end of the month, she and her coworkers started feeling symptomatic — Barber had a headache, felt like she had a cold and was exhausted. She came home from work and went right to sleep, "which is not like me," she says.
She didn't have a cough or a fever, so she didn't think she had COVID. But on April 3, 2020, she tested positive.
"My initial COVID case was very mild," she says. "I just had your standard COVID, you know, the body aches, the fatigue, the headache. Lost sense of taste and smell. Very minimal symptoms."
For more stories about Long COVID, pick up this week's issue of PEOPLE, on newsstands Friday
After two weeks, she was feeling better and went back to work. But three days later, she was face-down on the couch and felt sicker than before.
She kept trying to return to work and failing. "Every time I would go back, I would just be too tired," she says.
"One of the times I went back, I tried to do a standard tube-feeding procedure and I couldn't remember what to do. I had no idea. And I was like, 'I'm going to kill someone. I can't be doing this.' I had to call my supervisor and say, 'You have to take over. I don't know what I'm doing.' The brain fog was just so bad. So with three failed work attempts, I just kept getting worse and worse."
On the morning of May 4th, she was with her husband Dave Barber at their home in Saugerties, NY, lying on the couch when she told him, "I can't move."
Her husband took her to the emergency room. "It was so scary," Catie says. "I just had tears rolling down my face. I'm like, 'I am going in here to die.' "
The ER doctor was concerned when he called Dave because Catie looked very sick, but he couldn't determine what was wrong.
"You can hear it in his voice he's beside himself," remembers Dave, 32. "He says, 'Something's clearly wrong here. I want to admit her, but I don't have anything to admit her for.' He goes, 'All her blood work came back and it's flawless. It's some of the best blood work I've ever seen.' Which makes sense, because she was training for a half-marathon."
Without a reason to admit Catie, insurance wouldn't cover her stay. Her husband asked the doctor if she was dying, and he said no. She was released and sent back home. Their parents took turns staying with her during the day, while Dave worked.
"I was stuck in the apartment. Because the only way I could leave was if my husband carried me," she says. "It was a very, very depressing time. I cried myself to sleep for months."
Through the Facebook group Survivor Corps, Catie learned about the Mount Sinai Center for Post COVID Care in New York City, but she couldn't get an appointment until September.
"I thought I was living a slow progressive death. We had no idea, and neither did the doctors. Nobody could tell me if I was going to get better or not," she says.
By late August, Catie wasn't able to walk at all and was wheelchair bound.
She had her initial consult at Mount Sinai in early September. "They told us flat out, 'Listen, we don't have all the answers, we're still learning, too, but we know what you're going through. We have hundreds of thousands of people like you,' " Dave remembers.
Doctors suspected Catie's COVID had caused Postural Orthostatic Tachycardia Syndrome (POTS), a condition which affects blood flow. The couple felt relieved to have an explanation.
"Up until that point, nobody took us seriously. They thought that it was anxiety," she says.
Catie Barber in the hospital
Two days before her follow-up appointment with a cardiologist at Mount Sinai, Catie woke her husband and told him she thought she was having a heart attack.
She showed him her Apple Watch, which charted her heart rate at 186 beats per minute. She told him goodbye — and said she wanted him to find another woman who could be his wife.
He called 911, and she started violently convulsing — it looked like she was having a seizure, her husband remembers. Her head and feet were slamming so hard against the ground, the next door neighbor called 911 too.
At the hospital, the ER doctor was familiar with long COVID, and made sure she didn't have a heart attack before releasing her so that she could make it to her follow-up appointment in New York.
At Mount Sinai, a cardiologist confirmed her diagnosis of severe POTS and Dysautonomia.
She started a high salt, high liquid diet, compression stockings, physical therapy, and breath work. Her progress was slow, but she was determined.
By January, she could stand again. In March 2021 she was able to stop using her wheelchair, and in April, she went back to work — armed with new empathy and understanding for her wheelchair-bound patients. It was hard working in the same place where she got sick, so in October, she started a new job as a dietician for the New York State's Office for Developmental Disabilities. She's continued improving, little by little, and can now walk a mile.
"I'm a different person now," she says. "I try not to think about, 'Well, I was running 13 miles before this.' I try to think about how far I've come from the worst of the worst of this. That keeps me going."
She shares her story hoping to advocate for the other COVID-19 long-haulers.
"I know that there are thousands, if not millions, of long-haulers struggling around this world," she says. "There is hope. I try to tell people, 'Just keep the hope.' Progress is so, so incredibly slow, but you will get there."
