R-0 may be the most important scientific term you’ve never heard of when it comes to stopping the coronavirus pandemic.
Nearly four months after being diagnosed with COVID-19, Karyn Bishof endures a long list of symptoms that includes a collapsed lung, chronic fatigue and a wildly irregular heartbeat.
But it’s disbelief from an insurer and doctors that’s frustrated her as much as her lingering health problems.
“You’re either told you had a quick cold or you end up on a ventilator and pass away,” said Bishof. “It’s really frustrating and you begin to self-doubt and, of course, it is a huge mental strain on top of all the physical ailments that you’re facing.”
Bishof, a Boca Raton, Florida, resident and former firefighter and paramedic, is one of countless coronavirus survivors with lingering side effects. Even President Donald Trump on Saturday seemed to discount COVID-19’s long-term threat when he said 99% of cases are “totally harmless.”
People with complications, self-described as “long haulers,” are uncounted in any official report as of now. But Bishof took tallying into her own hands when she posted a survey June 16 on social media. As of Monday, she’s gotten 1,280 responses from COVID-19 sufferers who say they, too, experience ongoing symptoms.
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She said she got a runaround from a workers’ compensation program linked to her former job, including the insistence she do a telehealth visit despite having a documented partial collapsed lung that demanded more specialized care. She finally was able to schedule an in-person appointment with a pulmonologist later this month after her attorney intervened, she said.
Still, White House Chief of Staff Mark Meadows defended Trump’s claim the virus is “totally harmless” in 99% of cases.
During an appearance Monday on “Fox & Friends,” Meadows said “the vast majority of people are safe from this” and, other than people with underlying medical conditions, the “risks are extremely low and the president’s right with that, and the facts and the statistics back us up there.”
Patients who experience COVID-19 complications is ‘significantly higher’ than 1%
But other experts say there is potential danger in telling the public COVID-19 is harmless to all but 1% of people with the virus. The Centers for Disease Control and Prevention warns older adults and people with chronic health conditions such as kidney disease, heart disease and diabetes face greater risk.
Dr. Kathryn Wagner, a neurologist at the Kennedy Krieger Institute in Baltimore, said published data suggests the share of people who experience serious complications is “significantly higher” than 1%.
The symptoms can include aches, anxiety, night sweats, rapid heartbeats and breathing problems. More recent research has revealed life-threatening complications such as stroke caused by blood clots.
“The concern about that statement is that people may not fully recognize the dangers of COVID-19 infections and may not take the appropriate precautions,” Wagner said.
Dr. Ashish Jha, K.T. Li Professor of Global Health at Harvard T.H. Chan School of Public Health and director of Harvard Global Health Institute, said it’s harmful to not communicate COVID-19’s risk and underplay its threat.
“Ultimately, a large part of how well we can control the virus is going to depend on people’s behavior,” Jha said. “And to the extent that you have leaders who are trusted by large segments of out population saying that it’s not a good deal, it’s all about testing and most people do fine and for 99% of people it’s harmless — it does two things: it says there isn’t an outbreak out there or not much of one, and even if you get infected, it would be no big deal at all. We know both of those things are not true.”
‘We survived, but we aren’t living’: Long-term coronavirus effects worry doctors
The virus that causes COVID-19 was publicly identified just over six months ago in China, and scientists don’t have data on long-term effects for humans. Nearly 3 million Americans have been infected and more than 130,000 died as of Monday night, according to Johns Hopkins University.
Jha said growing number of people with lingering symptoms and the amount of lung damage visible on scans “makes me very worried about functional capacity and long-term lung function in a lot of these people who survive.”
Though there is no data on long-term effects, Jha estimates “a sizable minority” of 10 to 20% of patients will have “meaningful long-term clinical effects of this virus.”
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Kennedy Krieger anticipates more and more children will need therapy to rehab from COVID-19 neurological and physical complications, so it has set up a clinic for children, teens and adults under the age of 21. Patients are assigned to a care team that includes a neurologist, podiatrist, mental health specialist, physical therapist and occupational therapist.
“There really is to need to help those who have been seriously ill with COVID-19 to regain their previous function,” Wagner said.
Adults and children recovering from severe cases might experience neurological issues, loss of strength, psychological distress, anxiety, depression and post traumatic stress disorder, Wagner said.
In rare cases, children develop multi-symptom inflammatory disorder that can trigger an exaggerated immune response. In such cases, the immune response attacks the heart and kidneys or trigger respiratory failure or stroke.
Bishof, the former firefighter, likened the experience of COVID-19 survivors with nagging health struggles to a “mass casualty incident.” She said there was a failure to recognize the severity of the illness for those who were not necessarily in the hospital but still dealt with health problems.
“Maybe we survived, but we aren’t living,” she said. “We’re not able to do what we did before.”
Contributing: Karen Weintraub and Nicholas Wu, USA TODAY.
Alltucker is on Twitter as @kalltucker and email at firstname.lastname@example.org. O’Donnell is on Twitter as @JayneODonnell and email at email@example.com.
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