The Pandemic Emergencies Are Ending. Where Does That Leave People Battling Long COVID?
With the federal health emergency ending in May, and masks a thing of the past, many people suffering from lingering effects of the virus known as long COVID feel like they are on their own.
“We were injured by this virus, and patients are losing hope. We feel swept under the rug,” said Shelby Hedgecock, an advocate who has had long COVID for three years. She is one of the estimated 15 million adults in the U.S. who, according to the CDC, are currently suffering from long COVID.
Long COVID is an umbrella term for health issues that continue or emerge anywhere from weeks to years after an infection of SARS-CoV-2, the virus that causes COVID-19. People with it are no longer contagious, but health issues related to the infection stretch on and on. It’s linked to more than 200 symptoms, said Linda Geng, co-director of the Stanford long COVID clinic.
“It's pretty well agreed upon that it is a complex, likely multi-system condition, of manifestations that persist after COVID infection, and it can be quite debilitating,” Geng said.
Fewer than half of adults in LA County who contracted COVID-19 were fully recovered a month later, according to a recent study by the USC Pandemic Research Center.
Researchers asked 675 people who contracted COVID if they still had symptoms four weeks later. Forty-six percent said they fully recovered, but the rest reported continuing symptoms.
Chronic fatigue is one of the most cited issues, as well as chronic pain and impaired cognitive function which affect people’s daily lives.
“People who have a more severe COVID case may have residual organ damage from their acute infection," said Dr. Alice Perlowski, an L.A. cardiologist who has long COVID. "But, even people with mild COVID infections can develop organ damage during the course of their long COVID.”
Much more work remains, like identifying long COVID biomarkers and developing treatments that address the root cause, she said.
“It's very reminiscent of rheumatologic conditions like lupus in that there is not one specific test that can particularly identify it, and the patient really needs to be followed over time to see if there is organ involvement that is not detected initially,” Perlowski said.
Antivirals cut the risk of developing long COVID if you’re newly infected. But for people already suffering, medical science is trying to catch up.
A debilitating brain injury
Before the spring of 2020, when she got infected, Hedgecock was working as a personal trainer in L.A., and was about to launch an online wellness business. She was 28 when she contracted COVID-19.
“One of the scariest things that happened to me was I couldn't breathe at night," she said. "I would go to sleep and my oxygen saturation would drop down to about 87 at night, and I would have a racing pulse of over 130. I did go to the emergency room on three different occasions and each time I was told, ‘you're up and you're moving, you're young, you're healthy, it's gonna be fine.’”
Her primary care physician at the time told her she didn’t need supplemental oxygen.
“I was literally crying about it because I couldn't breathe. I knew that it was very hard on my body,” she said.
Months later, under the direction of a specialist, Hedgecock underwent a test that measures electrical activity in the brain. It revealed she had experienced a hypoxic brain injury and left temporal lobe slowing of her brain.
If you think you have long COVID, this CDC checklist (leer en español) can help when preparing to see a health care provider.
CDC’s general symptoms of Long COVID (Not a Comprehensive List)
- Tiredness or fatigue that interferes with daily life
- Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
Respiratory and heart symptoms
- Difficulty breathing or shortness of breath
- Chest pain
Fast-beating or pounding heart (also known as heart palpitations)
- Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
- Sleep problems
- Dizziness when you stand up (lightheadedness)
- Pins-and-needles feelings
- Change in smell or taste
- Depression or anxiety
- Stomach pain
- Joint or muscle pain
- Changes in menstrual cycles
“It was due to the fact that I didn't have that oxygen support for months. A lot of it could have also been from inflammation as well, so it was a combination of the two. [The diagnosis] was very hard to hear,” she said.
She couldn’t read for 19 months.
“It was like there was a disconnect between the words and my brain,” Hedgecock said. “It was the strangest, most discouraging thing ever. That was in part, due to my brain injury.”
Her Medi-Cal health insurance wouldn’t cover rehabilitation and she couldn’t afford to pay out of pocket.
Like many people with long COVID, Hedgecock also has a diagnosis of postural orthostatic tachycardia syndrome or POTS.
“My blood vessels don’t constrict properly, so even to this day, I get very dizzy sometimes. I’ve passed out in the shower before, I passed out alone at home before,” she said.
The blood circulation disorder is the main reason she moved back to her hometown of Knoxville, Tennessee to live with her family. Tennessee’s lower cost of living coupled with her health slowly improving and nearby family support — she lives about 10 minutes from her parents — mean she can work from home designing websites and marketing materials.
Still, she doesn’t leave her apartment without a medical alert button that can instantly call an ambulance.
“I wear compression stockings, drink a lot of electrolytes, increase my salt intake, just try my best to manage that as I can,” she said.
I just kind of had to rehabilitate myself as best as I could. I would do little brain games and stuff like that.
Hedgecock has also started Blooming Magnolia, a long COVID nonprofit to address the isolation and mental health gaps left by a debilitating and confounding diagnosis.
“We're trying to bridge the gap to support patients with mental health care while we're waiting on these treatments and cures,” Hedgecock said.
‘I refer to myself as a professional patient’
Julia Landis was a therapist before she contracted COVID in the spring of 2020. She lives with her husband and dog in Ukiah, California.
“I was so fulfilled as a therapist. I was really able to help people and it was great work and I loved my life, and I've lost it,” she said.
She had what at that time was considered a mild case.
“I started to go downhill pretty steadily until the depression and anxiety became so crippling I just stayed in bed for about a year,” she said. “I refer to myself as a professional patient. A lot of my schedule is taken up with physical therapy and doctor's appointments.”
It's terrifying because there's just no way of knowing if this is going to be for the rest of my existence or, is this going to get better?
Unable to work, some people with long COVID have lost their jobs and homes. It’s also led to a breakdown in relationships. Landis said her extended family doesn’t believe her condition is serious.
“If this were cancer, I’d be living with family. I’m sure of it. That’s been the hardest part is not really feeling like anybody really cares, in the family,” she said.
She is one of an estimated 575,000 adults in California with long COVID so severe it impacts their daily lives according to the CDC.
“I'm literally praying for a cure. Or for the therapies I’m doing at a certain point tip the scales towards me being more well than sick,” she said. “It's terrifying because there's just no way of knowing if this is going to be for the rest of my existence or, is this going to get better?”
‘I felt betrayed’
Many long COVID patients also feel dismissed by health providers.
“I still have what's considered to be inflammation in my chest that makes it difficult to breathe," said Linda Rosenthal, a retired high school paraprofessional. "I have fluid around my heart, and I need a cardiologist to monitor it since it fluctuates.”
She saw a local cardiologist near where she lives in Laguna Woods.
“I had an echocardiogram. We had a conversation where he went over the results with me and we put a plan into place. That plan included going into his office in six months to have my next echocardiogram done,” she said.
During their conversation, Rosenthal asked that staff wear masks during her visits. If she contracts COVID again she could end up in the hospital, and she was afraid masks would no longer be required in health settings by that time.
“I ended that phone call and I was actually happy with the way it went. We had a plan in place, [the cardiologist] seemed happy,” she said.
Five days later, Rosenthal received a letter telling her the cardiologist would no longer be able to provide her with medical services.
“I was so surprised. And then I felt betrayed because it is terrible to get a letter where a doctor, although within their rights, says that they don't want you for a patient anymore because it causes self-doubt. Like, oh my gosh, what could I possibly have done?” she said.
Rosenthal found another cardiologist who is willing to do telehealth visits and will keep a mask requirement in their office after the state rule expires in April. But the practice is more than an hour away in Los Angeles County.
“When you have very little energy and much of it gets eaten up by continual medical appointments, something like this just throws another thing in your path that makes it more difficult to get the care that I deserve,” she said.
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