COVID-19 long haulers dont fit into virus stats. But some find comfort in support group

Author : xpnew

Publish Date : 2021-02-07 21:01:49

COVID-19 long haulers dont fit into virus stats. But some find comfort in support group

She remembers wanting an easy answer. “’I had done some snow shoveling, so maybe it was that?’”

Soon, she didn’t have the strength to lift her 18-month-old.

After joining a Facebook group with others like her, Ririe realized there was more to her story.

Thousands of others weren’t “recovering” from COVID-19 as quickly as usual. Few questions had answers. And many felt written off by some doctors, who didn’t understand the burgeoning phenomenon.

He didn’t know anyone who had contracted COVID-19 back in July, when he got sick. Weeks later, his chest tightness wouldn’t budge, and eventually his heart felt like it “was getting ready to crawl between my rib cage and shoot out,” he said.

He looked for answers — turning to others who were also in it for the long haul.

“There’s no statistics for us. They talk about life and death. ... But the definition of the recovery statistics — all of us long haulers who haven’t received a recent diagnosis” don’t fit, Smith said. “Our story tends to get lost in the shuffle very frequently.”

Support groups offered much-needed relief to some COVID-19 long haulers, who are left with a litany of symptoms ranging from brain fog to heart murmurs to trouble breathing, without a timeline for when symptoms will subside.

Ririe said she was “one of the luckier ones.”

Her doctor saw all normal signs but ran a blood test just to be careful. Ririe’s blood was thickening. She got on blood thinners and other medication.

The clinical validation that something was up relieved her some. But she just wanted to contract COVID-19 and “get better, like most people.” She wanted to carry her 18-month-old again. And she wanted to get validation.

“To have people you can actually reach out to who are going through the same thing, when you have no family and friends (who are), is really invaluable,” Ririe said.

“The group really gave me this support and the idea that you’ve either got to find a new doctor or you have to keep advocating for yourself when you come in,” Smith said. He shopped around until he found the right doctor that ran tests and found COVID-19 was worsening his tachycardia — “electrical misfires” in his heart — and put him on a set of prescriptions, including an inhaler daily.

Smith doesn’t fault doctors for not believing him at the start.

“They’re learning the same way I am,” he said. But finding the right doctor, Smith said, “gave me comfort knowing they were trying to learn and they weren’t set in their ways or anything.”

Other members of the group share recommendations for doctors who believed their symptoms or tips and tricks for making it through the day.

Many long haulers tell Dr. Richard Nathan that they can only do one thing for the day, maybe make breakfast, and they’re done.

“It’s a little atypical because we tend not to see this whole constellation of illness when people recover from typical illness,” said Nathan, who specializes in infectious diseases. Long haulers, he said, are a whole new “area” of medicine to understand.

“The patients are right. They and — unfortunately, we — don’t know that much about what to do,” Nathan said. “We’re just literally in the early stages,” with new research suggesting the coronavirus may cause.

“One week’s a pretty decent week,” he said. “I get optimistic and think I’m starting to feel better. And then the next week comes along.”

Smith was an avid runner. Now, if he gets on the treadmill for a light run or walk, his heart rate shoots up. Even while watching movies, he said, “it’s not unusual” for his heart to act up.

At the start, “I didn’t know if I was just overthinking it, if I just had to buckle down and face the music and fight through it,” Smith said. Once he found the Utah group, and eventually formed his own, “it was that game-changer of knowing I wasn’t alone and there are ... others in that group that I can oddly relate to.”

Ririe can run errands now, which means she’s doing better, four months since her COVID-19 diagnosis. But not knowing when her symptoms will fade has made planning for the future more difficult.

Ririe was hoping to go hike Table Rock next summer again with her husband, to celebrate her anniversary like they did five years ago. She’s not sure anymore. “I can’t even hike a little sledding hill,” she said.

“This has changed my life, and there’s no end in sight,” Ririe said. “There’s no timeline, and even if there is, is there an end? Or is this like my new normal for the rest of my life?”

She tries to take it day by day.

“That’s the only way to exist with it and to be happy in life,” Ririe said. “So I’m in it for a long haul. But at least I’m in it, you know?”