Josephine Keefe’s initial fight with COVID-19 was the sickest she’s ever been.
Daytime fatigue turned into hours of sleeping. Nights were plagued with insomnia.
Her loss of smell became so bad that standing over a pan of frying bacon could not change it. And she lost her appetite as her digestive system became fickle. One night, she could not stop vomiting.
One evening, Keefe’s father carried her down the stairs and into her partner’s car bound for the hospital. She received a full-body CT scan, an IV drip and oxygen. The coronavirus was ravaging her body and clotting her blood but not to the point that she had to stay any longer at the hospital. That was Day 9 of her illness.
Back at home, her fever continued to rage as her body and head ached. She fought off the worst of the virus for most of July. Keefe, a mother of two whose father lives with her and her children, took the pandemic seriously. She worried about her father getting the virus. She worried about other people close to her with underlying health conditions. And she worried about her own children who might not do well with the virus. She worried slightly less about herself, a healthy 35-year-old actor and adjunct professor at Gonzaga University.
She acknowledged that even though she was very sick, it was still a moderate case compared to many who are hospitalized for much longer or lose their lives to the virus.
“It wasn’t a severe case, even though it felt like the sickest I’ve ever been in my life,” Keefe said. “And it’s a scary position to be in with my kids by my bedside.”
Months ago, if the novel coronavirus didn’t send you to the hospital, you were likely deemed OK by doctors or even yourself. Many young people experienced minimal symptoms, losing their sense of taste or smell, or getting a headache that felt like a sinus infection. And then they were fine.
It turns out thousands diagnosed with COVID-19 in the U.S. and internationally are not fine, however. Months after being diagnosed with the virus, their symptoms lingered, changed, reappeared or new conditions emerged.
This group, called “long haulers,” continues to face COVID-19 in many ways. Some have lost their short-term memory; others get monthly bouts of flu-like symptoms. Still more have what’s called brain fog, or fatigue, gastrointestinal problems and breathing and sleeping problems.
In Spokane County, the health district estimates that 64% of residents who have tested positive for the virus are 28 days beyond their illness onset. They are considered “recovered.” As the pandemic months drag on, however, it’s clear that not everyone who has had COVID-19, including young, healthy adults, is actually recovered.
July was just the beginning of Keefe’s fight with the virus, as her symptoms did not disappear but instead morphed into new ones. She began to lose some of her hair. The fatigue intensified. She began to experience brain fog, short-term memory loss and struggled to focus.
Five months after her initial diagnosis, Keefe continues to experience symptoms that affect her day-to-day life. The brain fog is the most debilitating, she said, especially as an actor, where memorizing lines, rundowns and the like are vital to success. She is directing a show at Gonzaga this spring, and previously, she said, she could more spontaneously plan. Now she is judicious about her planner and writing things down or else she’ll forget.
“I can’t say that I feel like myself, and it is at that point where I’m concerned or worried about when my brain and my memory and my focus will start to feel normal again,” she said.
Keefe said her brain fog is a lot like a part of her brain is asleep at the wheel, and she constantly has to stay as aware of herself as possible in order to stay present in discussions or meetings. She feels trapped sometimes, having to focus twice as hard as she normally would to stay on track in meetings or conversations. Zoom meetings can lead to extra stress for her as she fights to stay focused.
“It can be mortifying when my brain goes to sleep for a second, and I have to reconnect to the people I’m articulating my thoughts to and do my best,” she said. “Oftentimes by the end of the day my best is getting me by, it’s not what I used to be, and it’s not the same energy, focus or detail that it used to be, and that’s painful.”
Symptoms months after diagnosis
Alli Talmage, a 26-year-old Gonzaga alumna, got the virus this summer. Now a paraeducator in the Tri-Cities, Talmage has had ongoing symptoms from the virus, including an elevated heart rate even when just sitting on the couch, difficulty breathing and adjusting to extreme temperatures.
She had been a dancer, participating in theater productions. Now she has been prescribed an inhaler, and climbing the stairs to her apartment winds her. She said her symptoms persisted enough for her to go to the doctor long after her initial bout with the virus.
“I had to advocate for myself and be like, ‘Hey this is not normal,’” she said. “Even though I have had health problems in the past, nothing is like this, and it’s not the cocktail of symptoms I have now.”
Talmage reached out to Keefe after seeing she was diagnosed with the virus on social media in July. Finding community and others experiencing long-term symptoms not outlined by the Centers for Disease Control and Prevention has become part of many COVID survivors’ experiences.
Groups began forming online in March and April as people infected with the virus early in the pandemic had adverse, seemingly not flu-like, reactions to the virus.
Hannah Davis found solace in the Body Politic COVID-19 support group after she got the virus in March. Davis, who lives in New York City, had predominantly neurological symptoms. She spoke at the National Institute of Allergy and Infectious Diseases forum this winter on long COVID, describing her short-term memory loss, which led to forgetting her partner’s name or accidentally picking up hot pans.
Davis joined other survivors still struggling from COVID-19 months later to continue to organize patient-driven research.
The Body Politic COVID-19 Support Group brought Davis and countless others together to drive forward the Patient Led COVID-19 research, which resulted in the first survey of nonhospitalized COVID-19 patients, Gina Assaf, one of the group’s organizers, told an international research forum last week.
The initial Body Politic survey, published in May, found that COVID-19 patients of all ages were suffering from myriad symptoms that spanned far outside the flu-like group outlined by the CDC. Of the 640 patients surveyed, 90% had not recovered and were experiencing additional symptoms to what the CDC was listing at the time. The majority of patients in the survey were not hospitalized.
Brain fog, dizziness, gastrointestinal symptoms and elevated heart rate and temperature were all reported just as much as the traditional flu-like symptoms in patients in the survey. Notably, Davis said that more than 70% of people reported memory issues as a symptom, and this was in patients of all ages, not just older ones.
Davis and the Body Politic group are advocating that it be called “long COVID,” indicating that it’s a continuation of the virus’s effects and could be a continuation of the virus in a person’s body.
“I think one of the things that’s still not understood about long COVID is how serious it is,” Davis said. “People still imagine it as you’re at home with a cough and fever and cozy on the couch.”
More support groups like Long COVID Support on Facebook and Survivor Corps have popped up offering survivors places to share symptoms and experiences, as well as offering researchers an opportunity to engage with patients who traditionally might have been very hard to find.
Nationally, there are still discussions happening about what to call the suite of symptoms and ongoing illness Davis, Keefe, Talmage and countless others are experiencing.
Technology hasn’t come far enough for those experiencing symptoms to test themselves for viral particles at home. Earlier in the pandemic, long-term care residents who tested positive for the virus continued to test positive for weeks after their initial diagnosis.
More research needed
COVID-19 can be deadly. In Washington, 1.4% of cases have ended in death. However, the vast majority of people who get the virus survive, many without ever being hospitalized. Statewide, only 6.3% of people with the virus have gone to the hospital.
Not all patients experiencing long-haul symptoms were hospitalized, either. In Natalie Lambert’s research, the majority of patients she surveyed were not. Lambert, a medical researcher at the University of Indiana, released a survey of the Survivor Corps Facebook group in July, with more than 1,500 respondents.
She found similar results to what the Body Politic survey found. There were way more symptoms to be reported by patients, and many medical providers weren’t able to offer patients remedies or follow-up care.
“There are still many people having trouble getting access to care, and there’s not enough specialists who have learned a lot about COVID and are finding ways to treat it because some of the scans are not sophisticated enough,” Lambert said.
Lambert said there are still several unknowns when it comes to long COVID, and researchers need funding and support to study it in a more complete way.
Timothy Longdon had a fairly symptom-free initial bout with COVID-19. The 29-year-old from Spokane lost his sense of taste for about a week, which is what prompted him to get tested. He was surprised to not develop any symptoms of the virus days later.
It turned out his fight with the virus was not over, however, and he woke up a month later with intense flu-like symptoms that scared him. At the hospital, he asked for a flu test, but he tested negative. Doctors thought he likely was still experiencing COVID symptoms.
Since Longdon tested positive at the end of August, this two-day flu appears for about 24 to 48 hours like clockwork each month. Each time he panics, thinking he might be sick or contagious all over again, or potentially have the flu, only to be told it’s probably still long COVID.
For Longdon, like many who continue to experience sporadic yet ongoing symptoms after getting the virus, he wonders how long his monthly flu scare will continue.
“Will it be long term, maybe the rest of my life?” Longdon said. “They (doctors) don’t know.”
With much still to be learned about the virus, its impacts on people’s lungs, heart or other organs will likely not be known for several years. To understand the full impact of the virus on those still suffering with symptoms, a longitudinal study might be the best approach.
“If the effects of COVID are long term, we won’t be able to fully understand them until our research is long term,” said Dr. John Roll at the WSU College of Medicine. “Complete understanding would require a cohort effect of following people for their lives, I suppose.”
Researchers like Lambert are hoping for some immediate support to begin working on predictive models to see if patterns are consistent in patients experiencing long COVID, like if they have high blood pressure or were taking medications that may have impacted how they reacted to COVID-19.
“We need some sort of top-down organization and the nations of the world to help bring us all together to get a lot more funding in place,” Lambert said. “The race to the vaccine is essential, but at the same time the race to answers for these long haulers is essential.”
The lingering question on many of their minds: How long will this go on?
“It’s a strange experience to go through, because the body you think that you had gets challenged by a virus that none of us have ever seen,” Keefe said. “How can we ever arrogantly assume that I can be fine if I get the virus? Nobody knows that until they get the virus. That’s Russian roulette right there, and if that’s a gamble someone wants to take you have to be prepared for that.”
For Talmage and many other long COVID patients, they are empathetic to others who have had a worse time with the illness, but question their own future quality of life .
“I am still alive; I’m still moving and I can generally still wake up in the morning begrudgingly. But there’s something to be said about the fact that I worry about being able to breathe during the day and my heart rate and temperature and all this stuff,” Talmage said. “It makes you feel almost like you have a long-term or lifetime condition. It’s like your mind immediately changes to: ‘Am I going to make it through the day?’ instead of being able to get up and go.”
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