Long-Term Liability: New studies answer questions about long COVID as it affects students and parents

A ten-month-long cough. A warped sense of smell — mint toothpaste reeks of garbage. Fainting behind the wheel. Losing the ability to run.

A wide range of previously-unexplained health conditions sparked by long haul COVID-19 — an official medical condition where COVID symptoms persist three months after initial infection — are circulating East. Now new studies by the Scripps Research Center, National Institute of Health and Cardiovascular Research Journal are answering some parents’ and students’ questions about the condition and validating their experiences.

Ten percent of COVID patients develop long COVID, according to the latest Jan. 13 report by the Scripps Research Center, amounting to at least 65 million people worldwide with the condition — including senior Baya Aiken.

“The new studies are reassuring since they finally prove that it’s not just me,” Aiken said. “Other people have had really weird stuff happen to them because of COVID.”

Aiken lost her sense of smell and taste when she got COVID two years ago. Change in smell and taste is a common symptom of long COVID, according to Associate Professor of Medicine at Kansas University and East parent Michael Crosser. Chest discomfort, shortness of breath, body aches, heart palpitations and brain fog can also result, which Crosser saw at the long COVID clinic he worked at in 2021.

Weeks after infection, Aiken’s smell and taste returned differently than before — everything smelled worse. With no apparent solutions to the prolonged symptoms, she’s learned to cope with discomfort on her own as her senses slowly return to normal after over a year.

“Every time I brushed my teeth, I’d plug my nose because toothpaste tasted absolutely awful,” Aiken said. “It still tastes weird. I couldn’t eat red meat or chicken for so long because it literally smelled like trash. Normal food that my parents would regularly cook for dinner didn’t smell like food anymore.”

Crosser believes doctors have difficulty treating long COVID like in Aiken’s case because it’s so new and hard to diagnose. Traditional pulmonary function testing and CAT scans — common diagnostic tests — almost always come back “essentially normal” for long COVID patients, Crosser says, even if they experience symptoms. 

But a study published in December by the Radiological Society of North America introduced a new form of imaging: a Xenon MRI. The technology is the first known way to track long COVID, Crosser says, by showing blood perfusion changes in lungs that doctors were unable to quantify before.

“A lot of doctors thought people were making up their symptoms for a while,” Crosser said. “Unfortunately you still can’t just go to your doctor and have them order [a Xenon MRI] since it’s for research only, but my colleagues were doing the trial here and the pictures are actually quite stunning and helped to validate patients that were feeling abnormal.”

Despite no official diagnosis, East parent Robin Gedman experienced a 10-month cough after contracting COVID last January and believes she suffered long COVID. Her doctor prescribed her an inhaler that she found herself using 7-10 times a week to allow her to fall asleep.

Still struggling, Gedman was given a double-strength inhaler at her next doctor’s visit.

“I just couldn’t get rid of the cough when I would lay down at night,” she said. “I’d cough to the point of gagging.”

A cough-free period of relief was short-lived for Gedman after catching COVID again this past December, re-inflaming the issue and prompting her to reach for her nightly inhaler again. 

“It’s concerning that doctors don’t have every answer yet, but understandable because it’s so new,” she said. “I do sometimes think, ‘Gosh, am I gonna die earlier because I had COVID? What’s going to happen to my lungs?’”

Even the most rare symptoms of long COVID affect students. Junior Christian Gooley contracted Postural Orthostatic Tachycardia Syndrome (POTS) — a condition that affects blood pressure and causes unpredictable fainting and brain fog — a few weeks after losing his sense of smell with suspected COVID in March 2020. It took more than 20 doctor visits over three months before he was officially diagnosed.

“It’s frustrating because I went to the Mayo Clinic for three days, three nearby hospitals and my pediatrician without solutions,” Gooley said. “I was passing out two or three times a day, and they just told me to drink more water. I started taking all these medicines and nothing was working. No one could figure it out.”

He still passes out a few times a week and is hoping that doctors can find a way to prevent his fainting soon.

According to Crosser, patients like Gooley are more likely to develop POTS after contracting COVID, but he hasn’t seen POTS patients himself since the condition is so uncommon. A December study in the Nature Cardiovascular Research journal asserts that the risk of POTS is increased after COVID vaccination — still, at a five times lower rate than after COVID itself. But the link between long COVID and POTS still needs to be studied, according to Gooley, to ensure that other patients have a smoother diagnosis experience than him.

“It’s a little late for me, but the new studies excite me because they should help other people with new medicine and techniques,” he said. “A lot of doctors seem super interested, and I’ve already been in trials. We all want to see progress happen.”

According to Crosser, a more common long COVID symptom than POTS is fatigue — consistent with a December study from the National Institute for Health citing it as the most prevalent symptom.

“I think every single patient I saw had an element of fatigue that was not present prior to their COVID diagnosis,” Crosser said.

Parent Bob Griggs originally thought his excessive tiredness was from working 70-hour weeks as an ICU nurse and practicing martial arts — on top of catching COVID in early 2020. But as weeks passed, shortness of breath, dizziness, blood pressure issues and brain fog added to his fatigue, and he was diagnosed with long COVID by doctors he was seeing once a week. 

“I honestly thought I’d get better,” Griggs said. “But I still can’t do physical activity as simple as walking and standing sometimes. I couldn’t go to work without endangering patients, so I haven’t gone back since July 2021.”

Without Grigg’s income or worker’s compensation, his family is experiencing financial strain forcing his wife to pick up an extra job while he attempts online classes without much success. He’s applied for social security disability benefits in the past months and is waiting to hear back.

“I can’t read for more than 15 minutes at a time without getting exhausted, and books I used to enjoy feel like trying to understand a dense chemistry textbook,” Griggs said. “I can sleep all day and all night and still be tired. There’s some days where I can’t do anything except lay in bed, and there’s not many jobs out there that you can work for 30 minutes then take a nap.”

He’s back to visiting the doctor only once a year and wishes they knew more about why some days he feels worse than others, how long COVID is attacking many areas of his body and possible consequences of catching COVID again.

“There’s not even much point in going to the doctor regularly because they don’t know how to help,” Griggs said. “There’s almost nothing currently doable to help me other than to treat my symptoms. The new studies are great, but they’re not fixing my long COVID problem at the core yet.”