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‘I would never have imagined this would’ve happened:’ COVID Long-haulers share their unexpected journey

Cleveland Clinic says studies show that 30 percent of all COVID patients will be long-haulers
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KENT COUNTY, Mich. — When Sandra Babb first got COVID back in March 2020, she had chest pains, a cough, and shortness of breath, she said. She felt fine though. So, she went to Laughfest.

However, the next day her health spiraled and she developed a fever.

“I started feeling better about two weeks [later] and then the third week I just still had a cough, still had fatigue, but I thought I was on the mend,” Babb said during a Zoom interview in mid-March. “Then just another week went by and then more things would pop up and the cough never went away.”

It’s been over two years and Babb continues to experience the same symptoms.

And, she said, they got worse.

“I couldn’t remember the things I had to do,” Babb said. “Like just taking a shower, the steps of taking a shower or putting food together. I just couldn’t follow a recipe.”

She got brain fog. Food tasted different. Walking up and down her drive was exhausting, she said.

When FOX 17 asked to do the interview in person, she insisted that it be done via Zoom.

“This interview here will wear me out," she said. "I can make it through. I can do OK. But, when I’m done it may take days to recover from.”

Since then, Sandra, who used to hike, camp and refurbish furniture, has seen a number of doctors and undergone different tests. She’s since been diagnosed with cancer —that she believes the coronavirus accelerated — fibromyalgia, and Chronic Fatigue Syndrome.

That's the same syndrome that Jeff Rettig has been experiencing, he said. He first got COVID back in October 2020.

“I always had pain in my neck and then a really bad migraine headache,” Rettig recalled during an interview with FOX 17 in late March. “And then I started getting a fever. Then I think around the seventh or eighth day, I went to the hospital ‘cause I had pneumonia in one of my lungs with it.”

Rettig said he too lived an active life prior to COVID. He went to the gym all the time and had gone regularly for 15 years. However, after COVID, he didn’t have the strength to go anymore.

So, he sought the help of doctors.

“The first few initial appointments were like ‘You’re just getting older,” Rettig said. “I’m a part of all these  groups online where people are having symptoms and I’d bring those up and I just got gaslighted every single time. A lot of times, I went to the doctors, got referred to many, many doctors [and] was gaslighted by a lot of them.”

However, not at the Cleveland Clinic and Mayo Clinic, he said.

He felt heard at both.

But Rettig will never forget being gaslighted.

“When they first told me that ‘You’re just getting older’ and not believing you and telling you ‘You’re depressed,’ that was just an awful feeling especially when you’re feeling so bad,” Rettig said. “But then when I went to the Cleveland Clinic, they were like ‘Of course you are,' and 'How come the doctors there didn’t send you here before or do this for you or do that for you.’ So, they definitely believed me there.”

Rettig is currently undergoing physical therapy at the Mayo Clinic in Rochester, Minnesota. However, he first went to the Cleveland Clinic three months ago. They have a COVID Recovery Clinic and Dr. William Lago, who helps run it, said they see patients like Rettig all the time.

“We see a lot of brain fog, shortness of breath, palpitations, dizziness, issues with taste and smell, obviously are quite a mix,” Dr. Lago said during an interview with Fox 17 last week. “We do see some folks with stomach issues as well. But the things like fatigue and brain fog, the breathing issues and the dizziness seem to be the most common.”

Dr. Lago said what Rettig and Babb are experiencing is called Post COVID Syndrome, and they’re considered COVID Long-haulers because they’re symptoms lasted longer than a month.

He added that, according to various studies, at least 30 percent of all COVID patients will become long haulers. They opened the clinic 14 months ago to help these kinds of patients and they receive 125 new ones a month.

“The other thing that we found with Post COVID is it’s not just the folks that were in the hospital or who were on ventilators,” Dr. Lago said. “Sometimes it’s even milder COVIDs, who end up with these persistent symptoms.”

He said currently there’s no magic pill that’ll cure it. So, he doesn’t know how long patients will continue to experience these symptoms.

However, he recommended patients never stop asking questions even when they’re gaslighted.

“Be persistent,” Dr. Lago said. “Make sure that you find a provider that you trust and who have at least some knowledge. There are centers like ours throughout the country that can at least provide some hope and understanding.”

Rettig and Babb are a part of online COVID Long-haulers group where they chat with dozens of other people who are experiencing the same challenges.

And, despite mask requirements easing in March due to a low number of hospitalizations and deaths, Babb hopes people will do what they can to protect themselves so they won’t have to join the group.

“I would never have imagined that this would’ve happened,” Babb said. “You’re waiting for ‘Oh, is this going to go back to normal' and it just never does. It’s a new normal. I’ve been diagnosed chronic now.”