Catie and Dave Barber. (Photo by Dion Ogust)
On January 5th, Catie Barber posted on her Facebook page, “I really am the happiest girl in the world.” It was the day of her 28th birthday, but it was not what you would expect from a young woman running a half marathon who hasn’t been able to work, walk through the living room of her Saugerties apartment, or even think about much in the past ten months. But Catie was grateful for the gradual improvement she was feeling, a glimmer of hope that one day her wretched ordeal might be over.
Catie Barber has long had COVID, a mysterious complex of debilitating symptoms that affects at least one in ten COVID-19 victims. Nobody knows why some patients, even young, healthy ones with no previous illnesses, suffer from fatigue, palpitations, brain fog and myriad other symptoms for up to three years, while others recover within two weeks.
Catie caught Covid-19 early on March 31, 2020 at her job as a registered nutritionist in a nursing home. She had only been married eight months, came home exhausted that day and skipped her usual visit to the gym. For the next two weeks she suffered from fatigue and headaches. She tested positive for the new virus, which also made several of her colleagues sick, but when they recovered, she didn’t.
Back at work, Catie started with a routine feeding tube and suddenly found she didn’t know how to calculate it. This was “brain fog,” a common long-term COVID symptom, a cognitive impairment characterized by memory loss and difficulty thinking clearly. On May 4th, Catie could not go to the bathroom and her husband Dave took her to the emergency room for the first time. She tested negative for COVID-19 and tried to keep working but was so exhausted that on some days she was only able to work three hours. On June 10, she was given medical leave.
Fatigue, mental “fog”, cough, shortness of breath, headache, muscle weakness and joint pain are all symptoms of what Dr. Gary Rogg, an internal medicine specialist at Westchester Medical Center, calls post-Covid-19 or long-term COVID. He says it can affect important organs like the lungs, heart and brain, which makes a multidisciplinary approach essential. Women tend to be more affected than men and the average age so far has been 48 years. Depression and anxiety are common.
In the summer of 2020, Catie was practically paralyzed. She and her husband Dave Barber moved in with their in-laws because she needed three people to shower her. Catie was mostly bedridden and started what they called her “geriatric PT” when the former athlete relearned how to turn and straighten up. She cried herself to sleep most nights. Dave says it was his job to “talk her off the Sims,” not by denying things were bad, but by assuring her that things could get better.
But at first they got worse. On September 28th, Catie was convinced that she was going to die. Her heart rate was racing at 186 beats per minute (60-80 resting heart rate is average for Catie’s age) and she cramped. Dave called an ambulance and she was taken to the emergency room at Northern Dutchess Hospital where medical staff thought she had an overdose. In fact, Catie had the worst of her “flare-ups,” adrenaline rushes characterized by palpitations, nausea, diarrhea, fever, sweating, and paleness. They’re so debilitating that she didn’t recover from them by Christmas.
Catie and Dave knew she needed special care that wasn’t available in the Hudson Valley. A few days after their frightening heart attack, they had a long-awaited appointment at the Post-COVID Care Center at Mount Sinai Hospital in New York City. There she was diagnosed with POTS, a postural orthostatic tachycardia syndrome that is common in long-distance riders like Catie Barber. Caused by damage to the autonomic nervous system, this explains why Catie experienced a rapid increase in her heartbeat. Indeed, she felt the diagnosis was good news. “At least I understood what was going on. When I get up, the blood cannot get into my brain fast enough. “
“The virus has many different effects on the body. Since the virus goes everywhere after it gets into the lungs, so does the immune response. So some of the damage comes from the virus itself, but the immune system also damages your organs, ”says Dr. Zijian Chen, Medical Director of the Post-COVID Care Center on Mount Sinai. “It’s collateral damage.”
Still, Mount Sinai couldn’t do much for Catie. She’s too young for strong heart medication. They recommended tight compression stockings to stimulate blood circulation, extra salt to increase blood volume, and medical marijuana to stimulate their appetite, relieve pain, and calm their sleep. Catie was in a wheelchair for six months and could count on the invaluable support of her and Dave’s parents. They cooked, cleaned, and accompanied Catie to New York. Friends got on with a meal train and a GoFundMe account that raised $ 7,000 to help with medical expenses.
Since Catie contracted COVID-19 while working, her medical bills are said to be covered by the New York State Workers’ Compensation Board. But for reasons the barbers couldn’t determine, most of their bills – including three emergency doctor and other doctor visits, an ambulance ride, $ 7,000 for a psychiatrist dealing with diagnosed PTSD, her medical marijuana and other medications, which now add up to somewhere between $ 30,000 and $ 75,000 have not been paid. The barbers hired a lawyer who tried and won their case in court, but the state still hasn’t paid. Debt is another burden they share.
The future
Dr. Rogg says that many long-term COVID sufferers do not seek medical help at all and cause permanent harm to themselves. In addition to the countless physical symptoms – overwhelming fatigue, memory loss, shortness of breath – lost jobs, missed family celebrations, and on top of that, long-distance drivers also have to deal with people who don’t believe their opinion is real. Because of this, Catie shared her story with The Atlantic magazine and Good Morning America.
Dr. Rogg says patients will be discouraged from visiting his post-COVID-19 clinic as they will test negative for the virus despite symptoms. Your family and doctors tell them they are fine, get over it. “They are desperate,” he says, “but when we say ‘We believe you’, their eyes sparkle!”
Nobody knows exactly how long it will be after COVID-19, but Dr. Rogg says based on the last SARS-Cov-1 coronavirus, which spread in 2004, long-haul airmen recovered after one and a half to three years. “People are doing better, albeit slower than we’d like. You have more good days than bad. “
That certainly applies to Catie Barber, who is now back at work five days a week. She still comes home and collapses on the sofa a few nights a week, often sleeping 12 hours a night and a lot every Saturday. Dave no longer has to carry her up the stairs to her one-bedroom apartment; she can go up alone now. On days when she’s full of energy, Dave drives her through northern Ulster County, where they both grew up.
This isn’t just a medical story or the story of a young woman regaining her optimism after 18 months of despair. It’s a love story. Catie and Dave agree that the trials of the past year and a half have made their romance more permanent. They have already been tested in ways that most marriages are rare, and they are much closer than they otherwise would have been.
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