For COVID-19 'long haulers,' losing taste, smell least of worries

 For Nancy Carp, a shower is now exhausting. She has got to sit and rest after walking her dog, Chloe, and uses a cane. she will not hold a note or memorize a line, despite loving to sing and act.

Her teeth are loose. Her hair fell call at clumps for seven months, and she or he had a fever for nearly a day for 3. Her lung capacity is diminished. A loop recorder monitors her heart 24/7. When she stands up, she seems like she might pass out.

She can't sleep and is afraid to drive. She mixes up her words and numbers, sometimes writing them backward, repeating them twice, or forgetting them entirely. and therefore the small, 5-feet-3-inches-tall woman has lost 20 pounds in one year, dropping from 128 to 108.

Carp may be a 64-year-old retired school teacher in Ocala. and she or he is one among the thousands of COVID-19 survivors still experiencing symptoms long after first contracting coronavirus on March 14, 2020.

They call themselves long haulers, and tiny is understood about their shared condition, even among doctors.

"It's horrible. it is the worst feeling. it has been the worst thing that I feel I've ever skilled," Carp said. "It's new; it's novel. they only aren't getting it. It's like nothing else before."

Who may be a long hauler?

Long haulers are people whose COVID-19 symptoms linger or develop for quite the standard fortnight. Some last for a month and fade away; others are approaching a year with little relief. 

There is no set medical definition for a COVID-19 long hauler, nor are there standard conditions and coverings, said Dr. Nicole Iovine, chief hospital epidemiologist and communicable disease specialist at the University of Florida Health in Gainesville.

Men and ladies of all ages are often affected regardless of the severity of their virus case. The post-COVID syndrome is so new, nobody knows its cause yet, and estimates of what percentage of COVID-19 survivors become long haulers vary widely from 15% to as high as 50%, the medical doctor said.

"They're quite everywhere the place," Iovine said. Doctors only know of the long haulers they see, meaning more people whose symptoms aren't severe enough to see into a hospital or make a doctor's appointment may have the syndrome but not report it. 

"The people we are knowledgeable of, we're pretty sure it's just the tip of the iceberg," she said.

Carp is an example of older long-haulers. Unlike middle-aged patients, she doesn't need to worry about when she will return to figure or who will look out for her kids.

For Jasmin Perez of Citrus Springs, about an hour south of Gainesville past Ocala, being an extended hauler means she has been unable to figure since September and has racked up debt to pay her bills, even with federal pauses on student loan payments and deferred insurance charges.

The 44-year-old contracted COVID-19 twice, first in July reception and again in October in Boston while caring for her elderly father. Her lingering symptoms include dizziness, fatigue, headaches, calf cramps, nausea, and a little attack.

Before getting sick, she worked as a licensed massage therapist and Uber Eats driver in Gainesville. Perez said she just began massage work again in the week and plans to only work Fridays because her stamina remains so low.

"Right now, I'm taking it each day today. whenever I feel that I'm getting to recover or things are getting to recover, a replacement symptom or something else happens," she said. "I'm just hoping that my symptoms just getaway ."

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Young people can belong to haulers too.

Connor O'Bryan, a 20-year-old sophomore studying sports journalism at UF, picked up the virus in March 2019, over respite while at his parents' range in Lake Mary, near Orlando. He went from regularly frequenting the gym and playing soccer and basketball to being fatigued and wheezy whenever he exercised.

O'Bryan said that up until this month, his stamina was shot, his lungs felt like he developed light asthma and he would get pain if he pushed his body too hard. But he's improving and is now back within the gym and on the sector with friends.

"It's not like life-threatening, so I'm not really concerned," he said. He never saw a doctor for his symptoms and just pushed through instead.

A couple of his classmates, Mariana Ortiz, a 21-year-old junior, and Mariana Chehab, a 23-year-old junior, also experienced lingering symptoms after contracting COVID-19, though theirs resolved faster than O'Bryan's.

Ortiz said she first got sick in July and was upset because she tried so desperately to avoid the virus while staying together with her family over the summer break. She had shivers and nausea and lost her sense of taste and smell.

Even though most of her senses returned before she came back to Gainesville for college in August, Ortiz still can't smell her perfumes, apart from citrus scents, and she or he gets fatigued walking across campus. She has asthma from childhood, which contributes to her shortness of breath, and McDonald's chicken nuggets do not taste right, she said.

Chehab got COVID-19 on Jan. 6 and developed breathing issues as a result for the subsequent two months. whenever she climbed the three flights of stairs to her apartment, she got so winded, it felt like she had just finished running a marathon, she said.

Though it had been frightening initially to feel so sick and have the virus, Chehab said, she is not any longer scared because her symptoms are resolving and she or he has been in touch together with her primary physician.

How do they cope?

A common thread among all the long haulers that spoke to The Sun was that support and validation were important.

O'Bryan, Ortiz, and Chehab had family and friends who also addressed COVID-19 to speak to about their symptoms, plus much homework to distract them. Perez and Carp also had family and friends, also as various physicians and online support groups where many long-haulers share their struggles, advice, and hope.

"I in my very own shell felt I used to be alone and that I was the sole one suffering, and that I thought 'I'm getting to die, that's all there's thereto. I've never had this before, maybe I should just hand over,'" Carp said.

But then a lover sent her a news story that mentioned Survivor Corps, a grassroots movement that works to attach, support, educate, motivate and mobilize COVID-19 survivors. Carp went on a joining spree for as many long hauler groups as she could find, presenting and comforting herself with others' stories, then sharing her own.

Perez said she also joined online support groups to understand she isn't browsing this alone, especially after losing a couple of friends who didn't believe her story.

"It's embarrassing. People judge you and say, 'Oh you cannot feel that bad. You're only 44,'" she said. "It's just frustrating and alienating, especially with COVID because people say it's lies, it doesn't exist, on the other hand, you've got of these things happening to you … validation is incredibly important."

What do the experts say?

Iovine said her theory for lingering symptoms is that people's natural immune reaction to the coronavirus gets misdirected and start to fight their bodies instead, causing all kinds of issues. But it's just a thought.

"We do not have a really good explanation," she said. "We theorize that's it autoimmune, but we do not know needless to say ."

Research on the subject is simply beginning. In December, the U.S. National Institutes of Health was awarded $1.15 billion in funding from Congress to research long COVID, what it calls 'Post-Acute Sequelae of the SARS-CoV-2 infection,' or PASC, for subsequent four years.

Dr. Francis S. Collins, director of NIH, announced on Feb. 23 that the cash would support efforts to work out the PASC symptom spectrum, the number of individuals affected, underlying biological cause, vulnerabilities, treatments, and more.

So far, two medical studies on the topic are released and referenced by the director: "Characterizing Long COVID in a world cohort: 7 months of symptoms and their impact," by U.S. and U.K. researchers on Dec. 27, and "6-month consequences of COVID-19 in patients discharged from hospital: a cohort study," by Chinese researchers on Jan. 16.

Anyone over 18 who thinks they could be an extended hauler can contribute to future research by filling out a patient response survey online at patientresearchcovid19.com.

"The public health impact might be profound," Collins wrote within the announcement. "Our hearts leave to individuals and families who haven't only skilled the difficult experience of acute COVID-19 but now find themselves still battling lingering and debilitating symptoms."

At UF, Iovine said she hopes to make a post-COVID clinic where long haulers are often seen by multiple specialist physicians in one place rather than having to run between doctors' offices. it's one option UF is considering to advance its patient care, she said, but it's yet to urge off the bottom.

"The focus for therefore long has been taking care of the acute COVID patient, all the patients within the hospital … but now because the COVID numbers are thankfully coming down, these are times where we will check out these other aspects that require to be addressed," Iovine said. "What we all know immediately is many, or maybe most of the people, do eventually improve. It is often painfully slow, months and months and months, but most of the people do seem to enhance ."

COVID long haulers are people whose COVID-19 symptoms linger or develop after the standard two-week infection.

Anyone is often an extended hauler, no matter age, sex, race, socioeconomic status, and site.

Symptoms can last for weeks or months. Some cases are now hitting one year.

It is estimated that 15% to 50% of COVID-19 survivors become long-haulers.

There is little or no research and guidance from scientists because the condition is so new.

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