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Long-haulers recall struggles with prolonged side-effects of COVID-19

By Jamie Lampros - | Sep 16, 2021

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In this screenshot taken from video Thursday, Sept. 9, 2021, Dr. Jeanette Brown, assistant professor of medicine and medical director of the long-haulers clinic at the University of Utah, speaks to reporters about COVID-19 symptoms that can persist months after recovering from the illness.

OGDEN – Fabiola Jara and her fiance Eduardo were sick with COVID-19 for nearly two months. Eduardo recovered. Fabiola continues to struggle with symptoms.

“We got it in June of last year and were sick through the better half of August,” she said. “Around October, I started feeling things that weren’t normal. I had body aches and horrible pain, especially anytime I would feel stressed. I had horrible brain fog. I was forgetting things all the time and things took more time to process. I couldn’t concentrate. I was really tired. Then my taste and smell disappeared. I still have all of those things.”

Sarah Story experienced a loss of taste and smell as well after being sick with the virus.

“I got it back in November before Thanksgiving and my symptoms were very mild. My husband got hit really hard and was bad for about 10 days,” Story said. “Two days after we were feeling better, we ordered a pepperoni and jalapeno pizza. I couldn’t taste anything, but I felt the heat from the jalapeno.”

Story, 32, and Jara, 25, both Weber County residents, are classified as long-haulers, a condition in which people who were sick with COVID-19 recover from the acute phase of the illness but go on to have lingering, sometimes debilitating health problems. Because the vaccine was not yet available, neither woman was able to get the shot at the time they fell ill. Both have since been vaccinated.

“It has been a roller coaster ride,” Jara said. “My body took a complete 180 turn. My uncle became sick with COVID two months before I got it and he ended up dying. He was in his late 40s and was living in New York when they were bombarded with it. So this has taken a toll on me physically as well as emotionally.”

This past July, the University of Utah opened a long-hauler clinic. Dr. Jeanette Brown, assistant professor of medicine and medical director of the clinic, said 100 patients have been seen so far, with 300 on the waiting list and approximately 10 referrals each day. The majority of the patients are from Utah, but some come from surrounding states.

“A lot of patients have felt less heard and less listened to in the past,” Brown said. “We’re taking a lot of history and asking a lot of questions and doing a lot of testing. The most common thing we’re seeing is a lot of fatigue, especially post-extertional malaise, so if a person exerts themselves mentally or physically they have a lot of fatigue for hours to days. We’re also seeing heart palpitations and an abnormal sense of taste and smell.”

Dr. Richard Orlandi, professor of otolaryngology at the University of Utah, said approximately 80% of patients with COVID-19 experience a loss of taste and smell, causing the nerves in the nose responsible for the sense of smell to die out and then regrow. It can take months for a person to regain those senses, he said, and 5% to 10% will have permanent loss.

“It’s a little bit like pulling all of the wires out of a switchboard and putting them all back in,” he said. “Sometimes those connections don’t end up where they were originally.”

Orlandi said an example would be roses smelling like rotting food or gasoline smelling like lavender. He also said much of what we perceive as taste is actually smell, so you can have something sweet, salty or sour on the tongue, which is perceived as taste, but it’s really smell.

Story can relate.

“I can’t smell anything at all, but if I do, it will hit randomly and it will smell like rubber or mints or something rotten,” she said. “It hasn’t altered my diet at all, although I don’t eat anything spicy anymore because it hurts. I still get all of the sensations from food, like the salty, sweet and sour but no actual taste and I still enjoy candy because I get the sugar rush. I miss how Butterfingers taste, and I loved Cheetos Puffs but now it feels like I’m eating styrofoam.”

Story also said she once drank two glasses of curdled milk. She thought the curdles were ice chunks until she saw her husband spit out the rotten milk. She also steamed some broccoli and didn’t realize that she not only burned it, but melted the steamer clear to the bottom of the pan.

“Like flat as a disc,” she said. “I didn’t see it until I went to wash the dishes. Pretty sure that one took a couple of years off my life.”

Orlandi said the clinic tries to help people regain their sense of taste and smell.

“The idea is to retrain your body and sense of smell. Smelling coffee, peanut butter, essential oils once or twice a day may help regain some of that sense of smell,” he said. “We’re going to learn more and more as time goes on. The fact that there’s any sense of smell does bode well later on for recovery, which can take six months to a year. Any longer than that is very rare.”

Some long-haulers have also experienced heart problems, said Dr. Kevin Shah, assistant professor of cardiovascular medicine at the U of U. He said he has seen several patients, including children, with no known pre-existing heart problems develop shortness of breath, chest pain, palpitations, rapid heartbeat and even congestive heart failure. Severe incidences include an inflammation of the heart sac, known as pericarditis, and inflammation of the heart muscle, known as myocarditis. He added that although the vaccine has been linked to cases of both heart conditions, they are very rare and the vaccine benefits still outweigh the risks.

Jara, a certified nursing assistant at Ogden Regional Medical Center, said since becoming sick with the virus, she can relate and sympathize with the patients who come into the hospital and those who go on to develop long-haul symptoms.

“I know how it feels to be robbed of your health. It’s extremely hard to accept but that’s the reality we live in now,” she said. “It’s devastating to see patients and little children go through it. I hope we’re learning from this and we can work on taking care of each other,” she said.

Jara said she will get the booster vaccine when it’s available.

“I still mask up every time I leave the house and I always sanitize my hands. I’m vigilant in protecting myself and everyone around me. I don’t want to see the suffering anymore. I don’t want to see people dying anymore,” she said. “I don’t want to see people have to go through what I’ve gone through. My new normal is carrying around a bottle of Tylenol and Icy Hot. This virus is very deceiving.”

Symptoms of long-haul COVID-19 include:

  • Fatigue.
  • Shortness of breath or difficulty breathing.
  • Cough.
  • Joint pain.
  • Chest pain.
  • Memory, concentration or sleep problems.
  • Muscle pain or headache.
  • Fast or pounding heartbeat.
  • Loss of smell or taste.
  • Depression or anxiety.
  • Fever.
  • Dizziness when standing.
  • Worsened symptoms after physical or mental activities.

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