Hutton: COVID long hauler measures progress in small steps

The pinned Tweet from May 3 of Anne Klingeberger taking a selfie with her physical therapist is a milestone she’ll never forget.

Klingeberger, 37, walked a quarter of a mile in six minutes.

For the former marathoner, who thought nothing about getting up in the morning and taking a long jog around Lake Michigan outside her Chicago apartment a year ago, it was the start of a new life.

Her post-Long COVID-19 life.

That quarter mile might as well have been a marathon.

Klingeberger, a Lake Central High School graduate, hasn’t beat Long COVID.

Klingeberger has beaten it back for now.

She no longer has to gasp for air to get through a conversation. She can take a measured stroll around her neighborhood. She can carry groceries up to her third-floor apartment.

It’s the small stuff that matters. Klingeberger isn’t 100% but she’s much better.

“You can’t compare yourself to what you used to be,” Klingeberger said. “This is my new normal.”

And she’s OK with her new normal.

The old normal, which officially started last November, was a nightmare. She calls her 10-month battle with COVID-19 and then Long COVID lost time. It was a blur of doctor appointments, physical therapy sessions and group sessions with other Long COVID patients. She felt indescribable terror that included shortness of breath, heart palpitations, bone-tired exhaustion, a heart Arrhythmia and brain fog.

She is grateful now to get through a day without having to stop to catch her breath. Running marathons isn’t an option. Jogging? She is hopeful.

“My experience of who I am as a person has dramatically shifted,” she said.

Her COVID journey started about a year ago.

That’s when she and her fiance, Matt Vogel, decided to go to their favorite bar. Because of the pandemic, they hadn’t been out in a year. They were ready to have some fun.

She was fully vaccinated and they both ditched their masks for the first time in over a year.

Then it happened.

Both Vogel and she got COVID.

She said she was pretty sick for two weeks and that she had a week where “I couldn’t tell you what happened.”

Klingeberger rebounded for a week and then crashed for two more weeks.

She felt better in August but had not fully recovered.

In September, her life went sideways.

Klingeberger had lingering shortness of breath that wouldn’t leave.

“I’d take a deep breath but the air just wouldn’t seem to go where it needed to,” she said.

Then, the rest of it came.

Exhaustion, chest pains, brain fog and arrhythmia. Walking up three flights of stairs to get to her apartment wiped her out. Klingeberger wouldn’t leave her apartment for days. She cut conversations short because breathing was a struggle.

Klingeberger has asthma, but her shortness of breath with COVID was so much different than that.

“I was constantly gasping for air,” she said. “It felt like it would get to the top of my lungs and disappear. It was weird.”

With asthma, she said her chest and bronchial tubes “tightened up.”

In November, after two months of doctor’s appointments without results, Klingeberger went to the Long COVID clinic at Advocate Health Care, where she was diagnosed with Long COVID.

There is no firm definition of Long COVID. There is a list of about 15 symptoms, according to Chris Kalina, a social worker with Franciscan Health Care. The symptoms are usually extensions of what the “Long Haulers” had when they originally had COVID-19.

Kalina tried to set up a support group for people with Long COVID in Northwest Indiana. She had a group of 15 patients that were interested. There was one problem.

She couldn’t get more than two or three to attend a weekly meeting.

They were too sick. According to the Center for Disease and Control, 7.5% of people who contracted COVID got Long COVID.

“They were busy going to doctors,” she said. “That was their job.”

One woman who Kalina saw was a fit former Marine.

She had to quit her job because she couldn’t remember how to drive to work.

In the early stages of Long COVID, doctors were puzzled when patients came with these symptoms. They’d do testing and examine them, sending them home without any treatment plan, according to Kalina. There was an implication that it wasn’t real.

“Doctors were slow to catch up,” Kalina said.

Klingeberger’s day of reckoning came in November when she went to her first physical therapy appointment.

Her therapist ruled out the six-minute test. It was too strenuous.

She asked Klingeberger to march in place. Klingeberger couldn’t get to a minute.

When she tried to drive home, Klingeberger was so stressed that she blacked out. She ended up in the emergency room. Thankfully, Klingeberger had pulled over before she lost consciousness.

“I couldn’t get through the simplest test you could imagine,” she said. “It was something I didn’t have awareness of. I couldn’t even unload the top and bottom of my dishwasher at the same time.”

Klingeberger’s next few months were a blur of doctor appointments and PT visits. Klingeberger cried at almost every visit.

Klingeberger had quit her job in public affairs right before she got COVID. She was taking a sabbatical, and she had hoped to be working by the fall.

She also had to cancel her October wedding for the second time. It was originally planned for October of 2020. It’s now scheduled for this October.

Klingeberger napped constantly. Thinking, she said, was exhausting.

“I wish I could say I read the classics,” she said. “I did watch every season of RuPaul’s Drag Race.”

Progress was made through a simple breathing exercise and some light strengthening exercises. The breathing exercise involved humming for 10 seconds and taking a deep breath and then holding her hands overhead for 10 seconds and smiling.

She was hunching over when she walked, which made it harder for her to breathe. Getting in a more upright position helped.

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At her group meetings, the social worker told her to measure the smallest bit of progress. Making it one more step up the stairs before stopping to take a breath was progress.

In March, she had a breakthrough when she went to the University of Chicago for a doctor’s appointment. Klingeberger walked from the Medical Center to the bookstore without losing her breath.

“I was so excited,” she said. “I couldn’t believe I did it. I crashed the next day, but I felt like it was a milestone.”

Klingeberger’s two biggest worries were not being able to dance at her wedding and not having a job.

She believes both of those things are going to work out.

“My bad days are a lot better than they used to be,” she said. “My general baseline is better. I have this fear that it’ll come back. I’m waiting for the other shoe to drop.”

Mike Hutton is a freelance columnist for the Post-Tribune. He can be reached on Twitter at @MikeHuttonPT.