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‘Long haulers’: Some coronavirus patients say their symptoms are lasting months

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INDIANAPOLIS – Thousands of people who have tested positive for coronavirus say they are experiencing symptoms months later.

They call themselves “long-haulers” and are growing desperate for answers and acknowledgement.

One Indiana man, who asked not to be identified, said he contracted the virus in June after traveling to Florida.

“I was really fatigued and tired,” he said. “I kind of realized I was lying in bed a lot throughout the day.”

He said within a week’s time, he felt like he was hit by a truck.

“I woke up, stuffy nose. I didn’t really have a cough, I didn’t have a fever, but I just had this feeling – this overwhelming feeling – that something came over me. Eventually, it turned into a hardness of breathing. I definitely had a hard time breathing.”

The man lost his sense of taste and smell as well.

“I mean, I could have gargled gasoline and not tasted it. It went out completely.”

He tested positive for the virus and spent about a month battling his symptoms. He then tested negative twice in July. Yet, some of his symptoms have remained.

“If you get a sinus infection, maybe even the flu, you’re going to feel better in a week. But this? It just keeps going and going,” he told CBS4. “What has been left over for me has been fatigue and my high heart rate.”

The Hoosier said anytime he walks anywhere, his heart rate jumps to 90 or 110 beats per minute. Doctors don’t have an explanation, either. The man has had an EKG, an echocardiogram and has submitted blood work but everything has come back normal.

This Indiana man is one of thousands of people nationwide who have reported lingering problems. Americans are now turning to Facebook to share their experiences. Some say they have been suffering vision and skin problems, others have had gastrointestinal challenges.

Doctors across Indiana are also concerned.

“There is a handful of patients that have these prolonged symptoms that last much longer than just 30 days,” Dr. Ram Yeleti, Chief Physician Executive with Community Health Network, explained. “There is a small fraction of patients that were realizing can go on for quite a while.”

Dr. Yeleti couldn’t explain why some patients experience symptoms longer than others. He said based off of what they know from the previous SARS and MERS outbreaks 10-15 years ago, about ten percent of patients don’t end up in the hospital but face long-lasting challenges.

“We need to keep our eyes wide open,” he stressed. “There is still a lot we don’t know.”

Dr. Yeleti also told CBS4 he and his team are noticing more heart problems than before. After doing MRIs on several patients, about two-thirds of them showed evidence of myocarditis and inflammation of the heart.

“So, are these patients going to have congestive heart failure? Are there long-term heart consequences that we don’t know?” Dr. Yeleti asked. “We’re well aware of that and really, a little bit nervous about it, too.”

He said it’s important for physicians to take their patients seriously.

“If you’re still not feeling quite normal, that’s not in your mind,” he pointed out. “There is probably something else going on.”

“Longhaulers” tell CBS4 that is exactly what they want to hear. Many say it has been a mental challenge because they were let go of their jobs or had to leave because they felt too sick to return. Others say it has been difficult because their doctors and family members don’t believe them when they say COVID-19 is still impacting them seven months later.

Across town, nephrologists at the Indiana Kidney Specialists say they, too, are concerned. The group is prepared for a potential resurgence of coronavirus in the fall. They have seen more and more patients with acute kidney injuries since the pandemic began.

“The statistics now are coming out and showing approximately 30 percent of patients that are positive for COVID-19 develop some degree of kidney injury,” Dr. Nancy Baird said. “They’re also, of course, seeing patients that have had no underlying kidney issues, develop acute kidney injury and require dialysis.”

Dr. Baird said nephrologists define acute kidney injuries as any change to the kidney. They typically diagnose the problems through bloodwork.

“There are several theories about how COVID-19 affects the kidneys,” she told CBS4. “Number one: there is some evidence that there is direct toxicity to the kidney cells. Number two: there are changes in oxygen to the kidneys because of low oxygen levels in the blood.”

The Indiana Kidney Specialists were concerned about not having enough equipment at the beginning of the pandemic, but shifted their regular dialysis patients around and made COVID-designated units. They also made it so that patients could share dialysis machines throughout the day.

“It has been a big burden on the patients currently on dialysis and just the anxiety surrounding all of that,” she explained.

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