COVID-19 ‘long haulers’ face harrowing journey

Henry Mayo Newhall Hospital nurse Charisse Hammer wheels her father, 79-year-old Jose Miranda Jr., out of the hospital as he is released after undergoing intensive treatment for COVID-19 for more than two months. June 01, 2020. Bobby Block / The Signal.

While most people who contract COVID-19 recover completely within a few weeks, studies have shown anywhere from 10%-30% aren’t as lucky. 

In fact, millions of Americans are battling lingering symptoms of COVID-19 months after being diagnosed with the disease, individuals often referred to as “COVID long haulers.” A new research letter published February in JAMA Network Open is shedding new light on the condition, called post-acute sequelae of COVID-19, or PASC.

“PASC is defined as having lingering symptoms that last several weeks after you’ve gotten over an initial COVID infection,” Dr. Elizabeth Hudson, regional chief of infectious diseases for Southern California Permanente Medical Group and chief of infectious diseases for Kaiser Permanente Panorama City, said.

The study reported that 30% of respondents reported persistent symptoms, with the most common being fatigue and loss of smell or taste, while more than 30% of respondents reported worse quality of life compared to before getting sick.

For Santa Clarita resident Jeff, who asked his last name be omitted for privacy reasons, the long-lasting effects have been “unbearable.” 

It’s been more than a year since the 51-year-old tested positive for COVID-19 and he spent three weeks in the hospital.

“I remember the day I was admitted like it was yesterday,” he said, sighing. “I woke up, and I just couldn’t breathe. I immediately knew it was COVID.”

By the end of the day, Jeff was in the intensive care unit receiving oxygen. 

“It felt like a constant battle with my lungs — never did I feel like they were getting enough air,” he added. 

While those few weeks were difficult, Jeff said they paled in comparison to the roller coaster he’s been on since, as his health has never truly returned to normal. 

“It’s honestly turned my life upside down,” Jeff said, with the ups and downs of new doctors, medications and treatments leaving him feeling hopeless. “I’m not sure it’ll ever be the same again.” 

PASC can also present as new symptoms that come up weeks after an initial COVID-19 infection, Hudson added. 

These symptoms can include: fatigue, “brain fog,” shortness of breath, loss of smell or taste, cough, joint pain, feeling of heart racing, chest pain, trouble sleeping, depression/anxiety and more. 

 “There are so many unknowns when it comes to PASC,” Hudson said, adding that many people do have resolution of the symptoms, with time, however. “For most patients, these symptoms resolve on their own, within a few months of their initial COVID-19 infection. For some other patients with fatigue and ‘brain fog,’ these symptoms appear to take much longer to resolve.” 

A much larger study, published in early January in The Lancet, found that of 1,733 coronavirus patients who’d been hospitalized in Wuhan, China, with COVID-19, 76% were still experiencing at least one symptom six months after their symptoms began.

“There’s some correlation to how severe your actual infection was,” added Dr. Nilesh Hingarh, an infectious disease specialist at Henry Mayo Newhall Hospital. “If you were sicker, in the hospital, had severe infection, etc. your chances of having persistent symptoms are higher, and you’ll actually have a longer course of chronic symptoms, even. But if you had a more mild illness with COVID-19 your symptoms, your posts-infectious symptoms may not be as severe and may not last as long, as well.” 

COVID-19 patient, Tim Dugan, is greeted with balloons as he leaves Henry Mayo Newhall Hospital and is met by a group of family and friends on Friday, May 01, 202. Dan Watson/The Signal

Treatment can be a long road

Nearly 13 months after his initial diagnosis and hospital stay, Jeff is getting therapy to relearn the most natural thing in the world — breathing.

“They tell me my lung function tests are normal, but that doesn’t make it any easier to breathe,” he said. 

His current symptoms include constant pain in his chest, trouble breathing, and painful nerve pain in his hands.

Since his release from the hospital, Jeff said he has not been able to return to anywhere close to the active life he enjoyed before, which used to include constant hikes and mountain bike rides.

At this time, the best treatments are aimed at relieving symptoms associated with PASC, rather than PASC itself, both Hudson and Hingarh acknowledged.

For example, those with depression or anxiety are treated as such, while those with fatigue and shortness of breath are treated with physical therapy, Hingarh explained, adding that there are even therapies available for those who lost their sense of smell.

While no standardized treatments have been established, the National Institutes of Health is conducting a large national study to try to better understand PASC and come up with guidelines, and hospitals and clinics across the country are also looking to create PASC treatment centers for these patients, as well. 

“COVID-19 vaccines are extremely safe and are highly effective at preventing you from ever getting this infection,” Hudson said, adding that she advises those able to get their COVID-19 vaccine as soon as they are eligible to do so. 

COVID-19 vaccines have been proven effective in preventing severe illness and hospitalization, meaning that those who are vaccinated are more likely to have a mild illness if they do contract COVID-19, and therefore, have less of a chance of having significant long-term effects, according to Hingarh.

Those who have already contracted COVID-19 are also recommended to get the vaccine, Hingarh added.

“There’s a chance that the antibodies that you get from your acute infection may not last as long as we would like,” Hingarh said. “So, the vaccine is meant to give you an immune boost to give you, ideally, a longer-term immunity, because there are cases where patients get reinfected after their initial infection.” 

Hingarh also encouraged everyone to remain vigilant if abiding by public health guidelines, such as mask wearing, physical distancing and hand-washing.

“Even though we’re making some headway, COVID is still out there,” he added, “and we still have a little bit of ways to go with the vaccinations.” 

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