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'This is real': coronavirus long-hauler's months of agony

Scott Krakower was diagnosed with COVID-19 in April and is still experiencing symptoms in July. Source: AFP

Increasing numbers of COVID-19 victims are being affected by a mysterious post-virus illness.

The 40-year-old New Yorker is among a wave of patients being referred to as "long-haulers," whose recovery period extends far beyond the two or so weeks that are the average length of the illness.

He told AFP there are days he encounters "self-scepticism," wondering if the symptoms he's going through are real and he should be back at work - until, for example, he takes a walk and his parents or wife who are on the phone with him notice he's gasping.

This phenomenon is attributed to a mysterious post-viral illness that is still poorly understood - but increasingly reported by patients, who are sharing their experiences online in forums like the Long Covid Support Group on Facebook with more than 5,000 members.

"Just when I think I'm on a roll and have like three or four good days, I'll have about three or four hours where again I can't speak or my lymph node starts swelling on the right side of my neck," Mr Krakower said in a video interview from his home in Long Island.

Mr Krakower was working as the unit chief of the psychiatry department of Zucker Hillside Hospital during New York's coronavirus epidemic, which is where he suspects he became infected.

First came the loss of smell and taste, where "everything tasted like rubber", then a troubling cough that prevented him from teleworking, before he started losing his voice entirely.

Around three-and-a-half weeks in, alongside a high fever and chills, he began coughing so violently blood came out. He lost the ability to swallow and his voice became high-pitched.

That's when he wound up an emergency room, where physician Robert Glatter treated his laryngitis with the steroid dexamethasone to reduce the swelling.

Scott Krakower poses in front of his home in Long Island, New York. Krakower says he was diagnosed with COVID-19 in April and is still experiencing symptoms.
Scott Krakower poses in front of his home in Long Island, New York. Krakower says he was diagnosed with COVID-19 in April and is still experiencing symptoms.
AFP
 

Post-viral phase 

"The swelling that he was experiencing was from post viral inflammation that happened weeks after the virus and it's the immunologic phase weeks after that we get concerned about," said Mr Glatter.

Out of caution, Mr Krakower quarantined himself from his wife and two small children for a total of five weeks, which was especially hard on the family.

His daughter Hazel is two while his son Evan was only four-months-old at the time, and their only means of communication was FaceTime, which Mr Krawkower used to "join" the family for dinner or try to read his toddler bedtime stories. 

"I didn't really want anybody to go through what I went through," he said, adding that he still gets emotional now thinking about it. His isolation period ended after two negative tests.

Mr Glatter, his doctor, said Mr Krakower's ongoing fatigue is similar to what has been documented in other illnesses that cause chronic fatigue syndrome.

Scientists aren't quite sure why this happens, but, said Mr Glatter, it might relate to an injury to a part of our cells called mitochondria, which are responsible for generating energy.

Mr Krakower says that he was initially anxious to get back to work and to his life, but now "I'm really happy I took the time, and I continue to because each week that has gone by has been such a big difference".

Mr Glatter emphasised it was important for people experiencing these ongoing symptoms not to succumb to "medical gaslighting" where other people or the patients' themselves attribute the illness to anxiety.

"This is real," he said.  "This is not in people's heads. This is what people live every day, what they post online. 

"People are having therapy sessions because it's affecting their lives in such a way that they can't function as they normally would."

People in Australia must stay at least 1.5 metres away from others. Check your state’s restrictions on gathering limits. If you are experiencing cold or flu symptoms, stay home and arrange a test by calling your doctor or contact the Coronavirus Health Information Hotline on 1800 020 080. News and information is available in 63 languages at sbs.com.au/coronavirus

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