Karyn Bishof, a 30-year-old single mother and former paramedic and firefighter, has suffered from symptoms of COVID-19 for more than 120 days. In the midst of a pandemic where you can easily review the latest statistics on confirmed cases and deaths worldwideBishof is one of countless “long-haul carriers” living in the “intermission,” who has survived an initial infection only to find herself in a battle against persistent disease.
While the World Health Organization (WHO) divides COVID-19 cases into clear categories that include asymptomatic, mild and severe, a recent Dutch survey suggests that many patients with initially “mild” cases may not always recover at home in a few weeks. Rather, they continue to suffer severe symptoms from many weeks if not months.
In a new survey by the Centers for Disease Control and Prevention, 35% of the 292 respondents said they “had not returned to their usual state of health” two or three weeks after a positive test. People with persistent symptoms were dealing with cough, fatigue, and shortness of breath.
Before getting sick, Bishof was a very active person. She attended high-intensity Orangetheory classes five to six days a week, trained as a first response, and regularly played soccer and biked with her 11-year-old son. Now she’s out of breath after walking a block. “This has completely wiped me out,” he says, apologizing for her. difficulty breathing over the phone.
Karyn Bishof
Bishof first noticed the symptoms of COVID-19, the disease caused by the SARS-CoV-2 virus, in mid-March. She woke up with a sore throat and because the schools had been closed and he needed to go to work, he left his son at his father’s house two hours away.
“My father is high risk, diabetic and hypertensive, and his girlfriend is a cancer survivor, so my symptoms really stressed him out.” I worried, How much was around him? Could my son have caught him? Will it be asymptomatic and infect you?“
These concerns pushed Bishof to test himself. About a week later, his results were positive. For the next six weeks, her son stayed at his father’s house while she battled the virus alone at home.
When symptoms begin to persist
At first, Bishof had the typical symptoms of a COVID-19 infection: fever, coughing fits, loss of smell, nausea, vomiting and diarrhea. “But then it was like a train hit me. I had no problems with energy, memory, lack of concentration, and the scariest part was that there were some days when if you asked me to raise my hand above my head, I couldn’t do it. When I spoke to my son on the phone, I realized he was concerned about me, so I did my best to keep my emotions in check. Meanwhile, he was fighting not to lose consciousness, “he recalled.
A few weeks later, Bishof’s symptoms seemed to have improved in addition to a persistent cough. Her son came home and she tried to return to work. “At that point, I felt like I was going up and up, and then a week or two later, I fell back with more symptoms. That’s when it really hit me: this is not going to go away. “
Bishof continued to experience many symptoms on a daily basis, including extreme fatigue, insomnia, an altered sense of smell, hair loss, shortness of breath, and cough. But he also had neurological problems like mental confusion, memory loss, and heartbeat, Headaches like none I have ever experienced before. Other symptoms appeared in waves or only hit once or several times, including Heart problems such as chest pain, heart palpitations, and the feeling that your pulse is “churning throughout your body,” as well as blurred vision, dizziness, and a rash on the face.
The search for answers
Concerned that she was losing her understanding of reality, Bishof Googled “COVID-19 Symptoms for Weeks” and, for the first time, realized that she was not alone. An article in The atlantic by Ed Yong shared the stories of COVID-19’s self-styled “long-haul carriers” and led Bishof to discover and join various support groups on Facebook.
“I started asking questions and I was surprised by all the answers. Many people dealt with symptoms like mine and even weirder symptoms for months without treatment, no game plan, and no idea when or if these problems will ever end. “Worse still, many of them had family, friends, and doctors who didn’t they believed their symptoms were real.
As Bishof sought treatment and read the stories of others online, she felt compelled to take action and created an unofficial survey that garnered more than 1,500 responses from other long distance carriers, primarily in the US and UK. ” Part of the impetus for this was I hope people can take this to their doctor and show them that they are not alone. If you are a person who sees your doctor, they can fire you. But if ten or 20 people go to that doctor, he will start to see a pattern and believe in more people, “she says.
In a climate where medical professionals are often overwhelmed in the fight against an entirely new virus, long-distance carriers can vindicate and strengthen each other when doctors don’t listen, can’t care for new patients, or just don’t believe them. .
Fighting for recovery.
Lisa O’Brien, a 42-year-old financial analyst who has been ill with COVID-19 symptoms for more than 135 days, suspected she had blood clots after reading her friend Hanna’s story in an online support group. O’Brien’s concerns were initially dismissed by a doctor who advised him to take anti-anxiety medications and seek teletherapy.
But a week later, he went to the emergency room and insisted on a Hanna-recommended blood test. In a series of two appointments, doctors found two blood clots and prescription blood thinners. “Surprisingly, four of us found blood clots in our lungs that same week,” O’Brien said in an email.
O’Brien recently connected with the Mount Sinai Precision Recovery Program, which monitors the symptoms of COVID-19 patients over the long term. She registers with a doctor once a week. She wants other long-distance carriers to know that even if they test negative for the virus (as she did), they must still advocate for themselves and seek treatment. After all, early research suggests that diagnostic tests for SARS-CoV-2 can lead to false negatives. up to 30% of the timeEspecially if it has been more than a week since your symptoms first appeared.
In New York City, Mount Sinai also opened the Post-COVID Care Center, the first of its kind, which launched on May 13. So far, 250 to 300 patients have been admitted.
Zijian Chen, MD, the medical director of the center at Mt. Sinai says his team aims to design personalized treatment plans for long-term COVID-19 patients while studying their symptoms in hopes of understanding what’s causing them and improving treatment regimens. As mounting evidence suggests that COVID-19 has multiple systemic complications, the team includes specialists in primary care, pulmonary medicine, cardiology, infectious diseases, nephrology, physiatry, physical and occupational therapy, radiology, neuropsychiatry, behavioral health, social work, and pharmacy.
While there is still a lot to learn about COVID-19, one thing that stands out for Dr. Chen is that, beyond heart and lung problems, many patients have neurological symptoms that can be debilitating, such as extreme fatigue and difficulty. to concentrate on Bishof.
Find a way forward
Today, Bishof continues to experience chronic symptoms. “These waves not only drain physically but drain mentally because you dare to feel a little positive and happy to be improving, but then they hit you again,” she says.
Once on the front line as a paramedic and firefighter, Bishof fears that his fight with COVID-19 “will end his career.” Unable to work, he tracks his symptoms closely to share with his doctors and practices breathing exercises in hopes of strengthening your lungs.
For his part, Bishof hopes to see long-term COVID-19 treatment centers open in all states at multiple locations. “COVID-19 is does not go anywhere, and there are tens of thousands, if not hundreds of thousands of long distance carriers like me. What is going to happen to us? What will happen to the people who come after us?
If you experience long-term symptoms from a new coronavirus infection, Dr. Chen suggests that you keep a diary of your symptoms to share with your doctor and seek help from a post-COVID treatment center. Also do not rule out the possible mental health effects of this disease.
“With COVID, there is an increased risk of mental health and psychiatric illness because this is a very traumatic event. We are seeing patients who have symptoms associated with PTSD, depressionand anxietyAnd we want to be able to deal with that too, ”he says.
Otherwise, it’s important to understand that COVID-19 “survivor” can become a long-term fight, which is yet another reason to continue taking this pandemic seriously, even if you have a serious case of quarantine fatigue (and really, many of them we do).
In this spirit, keep wearing your mask, respect the space of others and health concernsbe careful with you loved ones, try to have a little compassion (even for complete strangers), and of course, wash your hands frequently.
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