‘Like my heart was trying to tear through my rib cage.’ Idahoans describe long COVID

BOISE (Idaho Statesman) — Hearing loss. Out of work for months. Eleven trips to the emergency room. Heart racing in the middle of the night. Lung tests, heart tests, brain scans and blood tests. Aches and pains. Words don’t make sense. Everything smells like burning wood.

Dozens of Idahoans shared these examples of what it’s like to have long-term health issues after a COVID-19 infection. Some have racked up medical debt, going from doctor to doctor trying to find help.

“For me, getting COVID was like getting on a tilt-a-whirl with the biggest bottle of tequila, and I can’t get off of it,” said Shauna Rankin, one of the Treasure Valley’s COVID-19 “long haulers.”

Answers are hard to find. A year into the pandemic, medical researchers are still trying to unravel the mystery of “long COVID” or “long hauler” syndrome.

People with even mild infections can have ongoing and debilitating symptoms months after they caught the coronavirus. One theory is that COVID-19 may trigger a harmful auto-immune response in certain people.

One group of researchers using data from thousands of COVID-19 patients found that nearly one in 20 people reported health problems two months later, and about one in 50 still had symptoms a month after that.

“I feel like people need to understand that there’s more to COVID than life and death,” said Travis Smith, a COVID long hauler who lives in Rigby.

The long haulers are “recovered” patients in Idaho’s COVID-19 statistics. There’s no category for people like Smith, who survived without being hospitalized, but now uses an inhaler to help him breathe and takes beta blockers to calm his heart.

In addition to the physical symptoms, a portion of people are left with psychiatric complications after COVID-19 — depression, anxiety, post-traumatic stress disorder, insomnia and dementia.

“Tens of thousands of people in the United States have such a lingering illness following COVID-19,” Dr. Anthony Komaroff wrote in the Harvard Health Letter in October.

VERTIGO, HEARING LOSS, BRAIN FOG — THEN, REINFECTED WITH COVID-19

Rankin is a nurse who saw many patients with COVID-19 before catching it herself. She and her daughter were among 183 people in Idaho who first had symptoms on Aug. 22, according to state data.

It started with diarrhea, which Rankin assumed came from the well water in their new house. But her daughter soon developed a fever and other common symptoms of COVID-19.

“About four days in with the diarrhea, I got massively dizzy — like, lay on the bathroom floor dizzy,” Rankin told the Statesman in a phone interview. The virus, or her body’s response to it, had attacked her inner ear, causing labyrinthitis.

Then, about 10 days into her illness, Rankin’s vision went blurry. She went to change her contacts, thinking that was the cause. When she looked in the mirror, she saw her right pupil was blown — constantly dilated. She went to the hospital.

That was not a typical COVID-19 symptom. But it would be described later that month in the Journal of Neurovirology, occurring in a Spanish patient after a COVID-19 infection.

Doctors ordered for Rankin a CT scan and an MRI. They found lesions on her brain, she said. But they weren’t as concerned about that as they were with finding any clots or signs of other neurological issues like multiple sclerosis.

About 10 days later, her pupil went back to normal.

For the next few months, Rankin’s symptoms would change. There was a six-week period of heart palpitations. Her blood oxygen levels would tank, and her heart would race. Yet, she never had trouble breathing, and her chest X-rays were clear. She had brain fog that made everything disjointed, like when she had a concussion in high school.

The virus returned to Rankin’s home in Wilder on Dec. 12.

The first time, only Rankin and her daughter had gotten sick. The second time, it started with Rankin’s husband and spread to everyone in their family of four. (Rankin tested positive again, with a test that is used to diagnose active infections. She had tested negative between the two infections.)

Rankin’s symptoms were the same as before, plus what she suspects was a case of pancreatitis, which felt like “aliens crawling out of my stomach, but (it was) in my back, too.”

Her husband, James Nettleton, struggled to get out of bed. He had muscle aches, cough and shortness of breath. He lost 30 pounds in a week and a half, she said.

A nurse himself, Nettleton had a problem with his heart rhythm before getting sick. The disease has exacerbated it, Rankin said. Weeks after getting infected, Nettleton still was sleeping most of the day.

They went into the Boise VA Medical Center on Wednesday to get a post-coronavirus workup on his heart.

Rankin’s vertigo has improved with specialized treatment. It was so bad she couldn’t walk from her bed to the couch for four weeks, she said.

She has yet to regain hearing in her right ear.

Because the syndrome is so new, nobody knew what to tell her about her condition or whether she would recover — or how to recover. She eventually began seeing a naturopathic medical doctor, whose treatments have included vitamins and diuretics.

“I still have muscle weakness, I still have fatigue, I still have vision issues,” she said. “I’m improving, but it’s really slow and really frustrating.”

A CLINIC JUST FOR COVID-19 PATIENTS

Months ago, as it became increasingly apparent that COVID-19 was a special beast of a disease, Saint Alphonsus Health System opened a clinic to treat people of all ages.

Chip Roser, medical director for the Saint Al’s COVID-19 clinic on Federal Way in Boise, says more than 2,000 patients have been referred to the clinic. Their needs range from a simple follow-up after diagnosis to ongoing medical care for “long hauler” syndromes.

Health care providers there saw about 65 patients a week as of mid-December and got anywhere from 35 to 50 new referrals a day from various primary care providers and Saint Alphonsus testing sites, Roser said.

“One of the scariest things we see is blood clots” and heart complications like myocarditis, he said.

Some patients have “brain fog” that makes it hard for them to return to work, he said.

“People can’t remember how to do simple tasks. They tell me they forget what they’re doing,” Roser said. “They can’t remember how to do simple tasks at their work, let alone the more complex ones.”

He notes that most of the people in the “long hauler” patient group are in their 30s, 40s and 50s. A few are in their 20s. Many of the patients have no prior health issues, and some had really mild cases of COVID-19 that morphed into something worse. Roser calls it a “capricious” virus because it affects people so differently.

At least once or twice a day, a patient will say they wish people who rebel against COVID-19 safety guidelines would get a glimpse at what it’s like for patients there, he said.

“Especially since the vaccine is here and being distributed, all of us are hoping that the acute numbers will start to fall within the next several months,” Roser said in a mid-December interview. “Then, we’re going to be left with these people who have the residual effects of the disease.”

‘FELT LIKE MY HEART WAS TRYING TO TEAR THROUGH MY RIB CAGE.’

Travis Smith was diagnosed with COVID-19 on July 25. The 30-year-old man was working in an Idaho Falls bank, and a coworker went home with a severe headache.

Two days later, watching “The Lord of the Rings: The Return of the King” in a movie theater with his wife, Smith noticed what felt like allergies — a little sneeze, a little cough. He took some NyQuil at home and went to bed. When he woke up in the morning, it felt as though a bus had been running him over all night, he said.

Smith and two of his coworkers had COVID-19. For the next two weeks, they isolated at home and kept each other company with group texts. Smith had fevers and body aches. He would get dizzy standing up. He was so tired he slept all day.

“And as the two weeks were coming closer, they were talking about how they were feeling better, they had more energy,” he said. “I said, ‘I’m still feeling rough.’ I wasn’t struggling with a fever anymore, but I was struggling to catch my breath. … Just doing the laundry would run me right out of breath.”

He was still too sick to return to work.

About a month after his diagnosis, Smith woke up in the middle of the night with a new symptom.

“My heart was going crazy,” he said, echoing a symptom other Idahoans described in interviews. “The only way I’ve been able to describe that night was, it felt like my heart was trying to tear through my rib cage.”

The racing, pounding heartbeat is called tachycardia. Smith experienced it before COVID-19 — about twice a year. The lingering effects of the virus changed that to “multiple times a day and throughout the week,” he said.

Among the “maybe about 50 doctor’s visits” since his diagnosis, Smith began to see a cardiologist.

But even specialists haven’t been able to repair his taste and smell — two senses that can be mangled by COVID-19. Smith used to enjoy food, but now he eats because he must. Beef, candy, peanut butter and his favorite Chick-fil-A nuggets all taste the same now: “Like I’ve gone into the middle of the car engine, and I’ve licked it.”

There’s an ever-present foul taste in his mouth, and everything smells bad, he said: “propane mixed with the stench of a skunk.”

Hoping to find others in Idaho with the syndrome, Smith created a Facebook group, Idaho COVID Long Haulers.

WHEN YOUR HEART RACES SO MUCH, IT FOOLS THE FITBIT

Shelly Thiel, a 52-year-old public school employee in Idaho Falls, doesn’t know where she caught the virus. But on Oct. 30, she was sitting in her office and felt fine.

“And all of a sudden, I just started projectile vomiting,” she said. “It just continued and continued.”

She went home, slept the rest of the day, then woke up feeling fine.

Three days later, she went home from the gym, got in the shower and was overcome with exhaustion. When she woke up the next morning, she had a fever. That day, she developed all the classic symptoms of COVID-19. She got sicker and sicker, and while she’d been eager to see how the election would play out, she hardly remembers election night.

About a week later, “I remember as I went to sleep, I thought I might not wake up in the morning, and I was OK with that,” she said.

She recovered — after a visit to the local emergency room — but with heart issues.

Thiel’s doctor says that if her symptoms persist for six months, she will need to see a cardiologist. But the hope is that they’re temporary.

“To this day, I still have the tachycardia,” she said. “If you looked on my Fitbit, you’d see that I’ve worked out every day since Nov. 2. … I haven’t, but it shows all these minutes because my heart is racing. Sometimes you wake up at night because your heart is racing, and you sit there with your hand on your chest.”

BRAIN FOG ‘LIKE A PING-PONG BALL IN MY HEAD’

Natasha Wingerter, age 36, is a doctoral student who also teaches at University of Idaho in Moscow.

She thinks she caught the coronavirus at a local store, where her neighbor’s girlfriend had gone the same day. Both of them got the virus, but the neighbor and Wingerter’s partner did not.

She thought she might have COVID-19 when she was cooking bacon and couldn’t smell it.

At first, she tested negative. A week later, feeling “like I got hit by a truck,” she went back and tested positive.

She had pain, a slightly raised temperature, was tired and had episodes where her heart would race, 180 beats per minute.

When public health contact tracers said she was clear to go, nothing really changed, she said.’

“I would go and teach for four hours on Fridays, and then the whole weekend I would be stuck in bed because it just killed me, physically and mentally and everything,” she said. “It would take me like three hours to write an email … just because, like, it wouldn’t make sense in my head.”

She went to the ER, but her complaints were chalked up to anxiety.

Two months after her illness, still struggling, she went to her primary care physician, who referred her to a cardiologist. It was September, and the heart doctor said “he was seeing these effects with athletes,” she said in a phone interview.

He prescribed beta blockers. He did blood tests looking for heart inflammation (the test results were “super high,” according to Wingerter).

“He said I most likely had myocarditis but it has since healed,” she said. She went from running miles a day to getting winded when she walked.

She feels better now but still notices bizarre things happening to her body, like hair loss and “my blood vessels bulge out of my hands and legs now.”

The brain fog kept her from working on her Ph.D. for six months.

She describes it: “You want to say the word ball, and you’re searching for the actual word ‘ball.’ You can think of it in your head, the word you’re trying to say. You can see it, but you can’t make the connection of what the word is. You’ll say, like, ‘Earth.’ … I keep on messing up saying, like, spoon instead of cup, still today.”

Her partner says talking to her was challenging for about a month after COVID-19. Wingerter would try to put sentences together, but mix them up.

During the interview, Wingerter’s partner chimed in from the background: “It was like dealing with someone who was really hammered. You would use a similar but very different word.”

“And I still do that,” Wingerter said. “It’s like I have a ping-pong ball in my head.”

The many doctor’s visits, lab tests, scans, ER visits and medications have racked up costs. Her initial COVID-19 bills were covered by health insurance. But it’s been “hit or miss” whether insurance has covered the bills from ongoing issues — which are so new to the medical world, they haven’t been conclusively tied to COVID-19.

Her local hospital has put her bills into a forgiveness program, but she’s still “probably a good $4,000 to $5,000 in debt,” she said.

“I basically didn’t do anything for five months … just rested,” she said. “And now I’m starting to be on the mend, I have energy again.”