SAN FRANCISCO (KPIX) — Doctors are reporting cases of people who have recovered from COVID-19 and who then continue to battle a litany of chronic medical issues.
Charlotte Juarez of Burlingame and Kayla Swift from Tracy are both living in a strange post-COVID limbo.
“Sometimes I wonder if I’ll ever be able to live along again,” remarked a tearful Swift.
“I thought I was going crazy. And my family did too,” Juarez said. Her loved ones could not figure out why she wasn’t getting better.
Both were hospitalized with COVID-19, recovered and were discharged. But that not the end of their ordeals.
“I beat coronavirus. But it’s beating me back,” said Swift.
“Yeah, it was just horrible and it’s still scary,” recounted Juarez.
After their initial recovery, the women developed lingering medical problems which include crushing headaches, nerve pain, brain fog, hair loss, and extreme fatigue.
They are far from alone. According to the U.S. Centers for Disease Control and Prevention (CDC), among those hospitalized, one in three suffers from the same perplexing issues.
“They’re referred to as “long-haulers,” said National Institute of Allergy and Infectious Diseases Director Dr. Anthony Fauci, member of the White House Coronavirus Task Force.
Dr. Fauci recently testified in front of a U.S. Senate Subcommittee about the growing number of these long-haulers, individuals infected with COVID-19, who after their initial recovery, remain sick with a constellation of symptoms for weeks, if not months.
“They have fatigue, myalgia, fever, and involvement of the neurological system as well as cognitive abnormalities such as the inability to concentrate,” Fauci enumerated.
“I couldn’t walk from the front of my door to my car without being out of breath,” said Juarez.
In a disturbing twist, some individuals who completely recover and remain asymptomatic, end up with heart damage.
“I am surprised to the extent to which this virus. How wicked it is,” exclaimed CBS News Chief Medical Correspondent Dr. Jon LaPook.
Swift, just 23 years old, developed two conditions. The first was postural orthostatic tachycardia syndrome (POTS). The condition causes an abnormally large and uncomfortable increase in heart rate when the patient changes position from lying to standing up. POTS symptoms include lightheadedness, confusion, blurry vision and weakness.
Swift also developed a second issue: myocarditis which caused viral cardiomyopathy. The condition resulted in a thickening of her heart’s myocardium and dilation of the ventricles.
“Some days I can handle it, and some days it doesn’t seem real, and then other days it feels absolutely hopeless,” explained Swift.
“It is truly insidious what this virus does to people’s bodies,” said photographer Diana Berrent, a long-hauler patient from New York.
After her infection, Berrent developed headaches, blurred vision, and gastrointestinal issues with persistent nausea. Her ophthalmologist recently diagnosed her with Post-COVID onset glaucoma.
She told KPIX 5 that with long-haulers, that’s apparently not the only eye problem.
“We are now actually seeing many, many cases of COVID onset macular degeneration and other ocular issues,” said Berrent.
The mother of two is also founder of Survivor Corps, an online group of more than 100,000 volunteers who share their post-COVID symptoms. The group quickly mobilizes to stoke and support ongoing research and have provided doctors, scientists, and academia a gold mine of data.
“We need to help the scientists and they’re looking for us to help them,” explained Berrent.
More women appear to be affected than men. While there is no hard evidence as to why or whether this is true, the reported gender imbalance points to a tangential challenge: with more women reporting, some doctors are not taking their complaints seriously.
“I got thrown on so many different types of, like, Lexapro, Xanax because everybody thought it was just anxiety,” mused Swift.
“We can almost look at that as a modern-day diagnosis of female hysteria. And, that needs to be overcome immediately,” noted Berrent.
One doctor who does take it seriously is Stanford Healthcare’s Dr. Kari Nadeau.
“We want to understand why it is that certain people are getting these long-term symptoms,” said Nadeau. “This is a serious virus and it’s something you don’t want to toy with, and you don’t want to be cavalier with.”
Nadeau and her team are tracking roughly 300 long-haulers in the Bay Area. Each month, they take blood and saliva samples and ask detailed questions.
The researchers want to see if there are any biological markers in the very beginning of a patient’s illness so that scientists can predict any adverse, lingering outcomes. They also hope the data they collect may help the medical community better treat and manage those with these conditions.
Dr. Nadeau’s study, which is looking at immunity, can enroll up to 1,000 patients.
“One thing that we’re finding is that even people who were mild at the very beginning can have symptoms that last almost 4 months,” said Nadeau.
“It’s been six months and our lives have completely changed,” said Swift’s mother, Leslie Swift, adding that Kayla has terrible gastrointestinal issues and has lost 40 pounds. She remembers her daughter before COVID-19 as a bubbly senior at San Jose State University.
“She was living the dream she was single, having a blast, going to school,” she said.
Her daughter has now moved back home and sleeps in the garage so she does not have to climb stairs. Her bed is her world. She gets around by wheelchair.
“I have no independence left,” said Kayla Swift.
As for Juarez, she worries about her family.
“They can’t see all the things that I used to do, and they’re concerned, and it just puts a worry on everybody,” said the mother, wife and grandmother.
Kayla got infected early in the pandemic before masks were recommended and Charlotte took all the precautions. She believes she caught the virus from an acquaintance who did not take precautions.
Both support the research and urge everyone not to let their guard down. Until more is known, the best advice is to reduce your risk of infection. That means wearing a mask, social distancing and practicing good hand hygiene.