Months after COVID-19 infection, patients coping with long-term symptoms

LONGVIEW — Seven months after Karilynn tested positive for COVID-19, she still is on oxygen.

The lingering illness first limited the 51-year-old’s ability to take on day-to-day tasks, and now keeps her at home most of the time.

“I didn’t expect to have it last this long at all,” said the Lower Columbia area resident, who declined to use her last name. “When they said you’re going home on oxygen, I came home on 4 liters and am on 1 (liter) now. It’s not a whole lot of difference to me, but they told me, ‘You were so sick and are doing as good as can be expected.’”

Karilynn is one of potentially millions of United States residents who have had long COVID-19, often defined as lingering symptoms four or more weeks after infection.

The prevalence of long COVID, also known as chronic COVID or post-acute COVID conditions, is hard to estimate, varying from 5% to 80% in different studies, according to the Centers for Disease Control and Prevention. Part of the variation is because there is no consensus on how to define long COVID, said Dr. Steve Krager, Cowlitz County deputy health officer.

“Even on a lower-end estimate, we’re talking about potentially millions in the United States and potentially thousands in Cowlitz County that may have some type of long COVID syndrome,” Krager said. “What that looks like greatly varies from person to person.”

Symptoms often attributed to long COVID can include difficulty breathing, tiredness/fatigue, “brain fog,” cough, chest or stomach pain, headache, pounding heart, joint or muscle pain, pins-and-needles feeling, diarrhea, sleep problems, fever, lightheadedness, rash, mood changes, change in smell or taste and change in menstrual cycles, according to the CDC.

Kaiser Permanente internal medicine physician Chris Shaw has been caring for patients in and out of the hospital since last fall, when some clinic doctors were called in to help in hospitals. Shaw said long COVID patients’ most troublesome and most common symptom is “brain fog” — a mixture of poor memory, fatigue, trouble concentrating and feeling things are not working right. Many patients who were hospitalized also have ongoing trouble breathing, he said.

“The only thing that would go ahead and really define this is having a positive COVID test at the beginning of symptoms and having really no clear ‘Wow, I feel great,’ when symptoms resolve,” Shaw said. “Usually people feel really bad when infection begins and then slowly less rotten as time goes on, but it just takes forever to get better.”

Karilynn still is in the “slowly less rotten” stage of recovery, though she has made some progress.

After testing positive on Aug. 19, and not feeling too bad for the first couple days, she went to the hospital on day 12.

“I realized I couldn’t walk a few feet without gasping for air,” she said.

She spent just over two weeks in the hospital, three days at PeaceHealth St. John Medical Center and the rest at PeaceHealth Southwest Medical Center in Vancouver. She said it was hard to be alone in the hospital for so long without seeing her family. Both hospitals banned visitors in most cases during the delta surge.

When she first went home, Karilynn said she needed help with basic tasks like showering and would get winded walking to the bathroom. She also had unexpected side effects, including hair loss.

She said she has been able to do more in the last month, including driving by herself for the first time since August. But baking, a hobby and side business, still is off the table, along with having a “girls day” out shopping.

“I’ve always been a goer before,” she said. “It taught me patience because I can’t do the stuff I did before.”

Who gets long COVID?

Researchers are studying long COVID, including potential reasons and risk factors. While older patients and people with underlying health conditions have an increased risk for severe disease, young people, including those who were physically fit before COVID infection, also reported symptoms lasting several months, according to the CDC.

More data is needed to determine if getting vaccinated against COVID-19 helps reduce the chance of long-term symptoms, Krager said.

It’s also unknown if having underlying conditions makes people more likely to get long COVID, Krager said. The long-term symptoms have been strongly correlated with severity of disease, and those with underlying conditions are at higher risk for severe illness. But that doesn’t mean non-hospitalized people, or children and others at low risk, don’t get long COVID, he said.

Kaiser Permanente’s Dr. Shaw said he hasn’t seen many patients with long COVID who weren’t hospitalized. However, some people may have not gotten tested, and it’s too soon after the omicron surge to know how many people infected then may have long-term symptoms, he said.

Karilynn has asthma and diabetes, two conditions that put her at higher risk from COVID-19. She also was hospitalized, potentially making her more likely to have long-term symptoms. She said she was worried about getting COVID-19 because of her asthma.

“We were so careful for a long time to not be around people, but then I knew I was exposed,” she said. “I wasn’t sure how my body would handle it but didn’t realize how close to dying I was. … I guess that allowed me to fight a bit more.”

Karilynn said she didn’t know at the time, but when she was in the hospital, medical staff told her family she might not make it. Since returning home, she said she has been extra careful about who she can be around because her immune system has been depleted by COVID-19.

Treatment remains elusive

Researchers still are filling in gaps, but know the virus that causes COVID-19 essentially enters every organ in the body, Krager said. Effects of that attack are seen in people with long-term symptoms of COVID, he said.

Along with effects of the virus attack, the immune system’s response causes many symptoms in COVID-19 and other illnesses, Krager said.

“The thought is that in people with long COVID-19, their immune system is over-responding for a longer time,” he said.

Shaw said there is not a well-documented treatment for long COVID patients. He advises people to eat a more plant-based diet to help activate the immune system and improve recovery.

“If I was going to give advice to people with chronic COVID, it’s ‘Hang in there,’ “ Shaw said. “It’s a really difficult situation to be in, but it does get better.”

There still is no end date for Karilynn’s recovery, but her doctors estimate she’ll need at least three more months on oxygen.

“I just have to pace myself, be careful and listen to my doctor,” she said. “It’s a long haul.”