‘Not everybody’s fine’; Long COVID sufferers detail struggles with chronic illness

With no cure, doctors focus on symptom management.

Prior to 2020, Linda Gast described herself as the Energizer bunny.

Always on the go, she enjoyed hiking, her job as an administrative assistant, baking, spending time with family, and more – but getting back to the norm has been a struggle since she caught COVID-19 in December 2020.

Nearly two years later, Gast is still dealing with the aftereffects of COVID-19. She’s not alone.

Doctors estimate the risk of developing long COVID symptoms after having COVID-19 is approximately 50%, and with no cure, long haulers are left with trying to manage their symptoms. The Dayton Daily News talked to people with long COVID who are struggling to fit this new chronic illness into their old routines, as many are having trouble working, doing household chores, or keeping up with hobbies.

Gast was hospitalized for four days in late 2020 with pneumonia in both lungs as a result of the virus. It took her nearly six months to recover her lost senses of smell and taste, which still have not been the same since prior to 2020. Gast is also still dealing with symptoms of fatigue, and at times, a racing heartbeat. She also still has to use oxygen equipment when she sleeps at night.

“People just say, ‘Oh, it’s just the flu. You’ll get over it,’” said Gast, who lives in Springfield. While her husband was able to get over COVID with a mild case of it, the virus did not want to let Gast go. She is doing better now, but she’s still not where she used to be.

“Not everybody’s fine,” Gast said. “It may not be just the flu for you.”

What is long COVID?

Individuals with long or chronic COVID-19 are continuing to experience symptoms of the virus weeks, months, or even longer after initially catching the illness.

Long COVID occurs more frequently with those who had a severe initial illness when dealing with COVID-19, but according to the Centers for Disease Control, anyone who has had COVID, even mild or asymptomatic versions of it, can experience the effects of long COVID.

“We are finding out new things about COVID everyday,” said Dr. Roberto Colon, chief medical officer of Miami Valley Hospital.

The CDC estimates approximately 30% of people hospitalized for COVID have also had to deal with long COVID. For those who were not hospitalized, the CDC estimates about 13.3% of COVID sufferers have had one month or more of long COVID symptoms, along with about 2.5% have had three months or more of long COVID.

Women are also more likely to have long COVID than men, according to a survey from the CDC. The survey revealed over 40% of adults in the U.S. reported having COVID-19, with almost one in five of those, or 19%, who were still dealing with long COVID. Approximately 9.4% of women compared to 5.5.% of men had long COVID.

Hispanic adults were also more likely to suffer from long COVID. Nearly 9% of Hispanic adults currently have long COVID, the CDC stated, which was higher than non-Hispanic white adults at 7.5%, Black adults at 6.8% adults, and non-Hispanic Asian adults at 3.7%.

Many symptoms of long COVID include general symptoms of tiredness, fatigue, and fever, as well as other symptoms that are respiratory and heart related, neurological, and/or digestive.

Amberly Zambrano of Lebanon experienced different symptoms after catching COVID two different times, including around Halloween in 2021 and then again in the winter after that.

“I am not sure if my symptoms qualify as long COVID or if it is related to other medical conditions, but I have chest pain, heart palpitations, and shortness of breath after having COVID twice,” said Zambrano, who was also never hospitalized due to COVID. “The shortness of breath has interfered with my work as a nurse aide and caring for my two-year-old and two-months-old, both born during COVID.”

The myriad of symptoms can make day-to-day living difficult, Colon said, as well as potentially present more health risks down the road. Direct complications from COVID could be lung problems—which could be permanent, such as scarring to the lungs—as well as indirect complications, such as increased risks of heart attacks and stroke due to the inflammation and damage to blood vessels.

Colon made the comparison to cholesterol, pointing out how risks associated with high cholesterol typically do not occur right away and they build up over time. Doctors may see the same thing with long COVID as it may take years for doctors to learn about the full scope of damage caused by COVID.

“We’re still learning about this disease and what it can do to the body,” Colon said.

For now, doctors are focused on helping patient manage their symptoms.

“There’s really no treatment for long COVID,” Colon said.

For individuals with long COVID experiencing heart palpitations, they may get medications to adjust their heart rates. For symptoms like loss of taste and smell, Colon said there is not a great treatment option for those individuals.

Anxiety, depression among symptoms

Long COVID can also wear on individuals’ mental health as some long haulers describe experiencing anxiety and depression following having long COVID.

“What is tough is getting people to understand,” Gast said. “We don’t want sympathy. We’re not asking for sympathy. I’m not a person who wants sympathy … I just want people to understand it is real. Unfortunately, it is real and it’s hard, especially if you’re an active person, a real active person.”

Gast said she has a supportive family, but others in her support group for survivors of COVID have difficulty getting family members to understand that long COVID is real and continues to affect them.

Gast also described the anxiety she’s experienced over the fear of getting COVID again, such has having a difficult time the first time she went to the grocery store after her initial recovery.

“I went into Walmart, and I just had a panic attack,” Gast said. “It’s almost like you have agoraphobia at first. You’re so worried you’re going to catch it again and go through it again.”

Preventing COVID in the first place remains the best option

There are some clinics, usually tied to academic institutions, which formed to address those with long COVID, such as UC Health’s Post-COVID-19 Clinic and OSU Wexner Medical Center’s multidisciplinary clinic for patients with lingering symptoms of COVID.

UC Health launched its clinic in August 2021, and Wexner Medical Center’s Post-COVID Recovery Program launched in September 2021. Each institution brings together a team of specialists from multiple disciplines, from pulmonology and cardiology to neurology and psychiatry, to evaluate and treat the multitude of symptoms long haulers face.

Until more information about how COVID impacts individuals in the long-term, doctors suggest preventing the spread of COVID-19 and reducing the risk for infections remain the best options for people to do. Doctors and health officials recommend getting vaccinated and staying up-to-date with boosters for enhanced protection.

“With every infection, you’re going to have additional risk for that long COVID to develop,” Colon said. “It goes back to continuing to protect yourself … Every infection is going to have that additional risk.”

To help those who are suffering from long COVID, Colon recommended people get educated and be understanding toward those dealing with those lingering symptoms of COVID. They may appear physically intact and there may not be an outward manifestation of the symptoms they’re having, but he said its not something that is just “in their head.”

“Long COVID isn’t just one thing,” Colon said. “It’s not something that they’re making up.”

Colon also encouraged those suffering from long COVID to seek help and reach out to their health care provider.

“It can affect anybody who’s had COVID,” Colon said.

For long haulers like Gast, they are learning to manage their symptoms, but this isn’t what Gast pictured her retirement would be like. She had hoped for more hiking and potentially to return to work, but she is still working on her recovery.

“It is better, and the only thing I can hope for is that as time goes on, it’ll get better and better. I don’t know if this stuff plateaus and you get to a point and that’s where it stays. I think that kind of remains to be seen,” Gast said.

What to know about long COVID symptoms

--- You’re not alone. It’s estimated that around 50% of people who get COVID-19 experience symptoms months or years later.

---There is no cure.

---More women have long COVID symptoms than men.

---Seek the care the of your doctor if symptoms persist.

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