How treating long-haul COVID-19 is affecting health care resources

Despite a constant, high-pitched ringing in her ears and the inability to enjoy most of her favorite foods anymore, Carina Graham knows her COVID-19 infection could have turned out a lot worse.

“The infection itself was pretty mild really because all I got was the fatigue, I was really tired, and my sinuses burned more than they ever had before,” the South Elgin woman said. “My husband and two kids also got it, but I'm the only lucky one that's still dealing with it.”

While unique at home, Graham is in the same boat as an estimated one in every three people infected with COVID-19 who find themselves needing additional medical treatments for symptoms that manifest or linger after the initial recovery from the virus.

“In our clinic we see many, many patients who have problems resolving their symptoms, and there is that impact on service,” said Dr. Marc Sala, a pulmonary and critical care specialist who treats COVID long-haulers in the Northwestern Medicine Comprehensive COVID-19 Center. “There's also an economic impact that is unknown with the effects of having such a high proportion of people unable to get back to their jobs because of this. And we've seen a little of that with some health care workers who got it too.”

Since her infection in March 2021, Graham's developed tinnitus and parosmia — ringing in her ears, and smell and taste distortion, respectively. She has seen an ear, nose and throat specialist multiple times and undergone steroid treatments that failed to resolve her issues.

“I want to say I lost 16 pounds in about three months because everything I was eating tasted rotten,” Graham said. “It's definitely getting better, but there are some things I just can't even stand the thought of anymore.”

Elk Grove Village native Emi Fukuda began keeping a journal of how things taste differently since her infection last August.

“That was the most depressing part,” she said. “I stocked up on Progresso soup because I knew I needed to eat something, but after two weeks in I was like, 'I need different temperatures and textures at least.'”

For Fukuda, there's a lingering floral or perfume aftertaste for many foods.

However, Fukuda hasn't sought medical assistance for her lingering COVID-19 symptoms, which doctors say is not uncommon for those with mild symptoms.

“For me, it hasn't gotten in the way of living my life and I'm hoping maybe it will come back and so I feel it hasn't really affected me in a way that I need to go out and seek a doctor's help,” Fukuda said.

But doctors say that any lingering symptoms should be examined because there may be treatments available. In some cases, the symptoms some long-haulers are experiencing are health issues that have become exacerbated by the infection.

“We're not seeing so many with loss of taste and smell as their only symptoms,” said Samantha Rodriguez, the system manager for the Edward-Elmhurst Health neurosciences program and acute care services. “If patients are performing their own research they might not choose to see a specialist because they might see there's not a lot we can do for those patients at this time.”

But Rodriguez said a consultation with doctors might reveal other issues that can be treated. A common one is sleep apnea, she said.

“You're going to be more tired and have muscle aches because your body is not getting the recovery it needs,” she said.

Many hospital systems like Northwestern and NorthShore — Edward-Elmhurst Health have created specialized long-hauler clinics to cope with the surge in patients needing this particular outpatient care.

Fatigue and “brain fog” are the more common post-COVID symptoms doctors in these programs are seeing, but they note there's no such thing as a standard diagnosis for long-haulers.

“There's myriad things that can happen and we can't predict when it's going to happen,” said Dr. Nimmi Rajagopal, associate chair of family and community medicine for Cook County Health. “Even mild cases it takes a long time to recover.”

And when there's a case surge that increases inpatient cases like what occurred recently, medical professionals treating long-haulers may be called in to assist with the newly hospitalized patients, keeping them from treating long-haulers.

“People who have other illnesses are not going to be seen as quickly,” said Dr. Kiran Joshi, colead and senior medical officer for the Cook County Department of Public Health. “And if they're not vaccinated, that's a hospitalization that could have been avoided.”

Graham was not yet eligible for the vaccine when she was infected. Then her doctor suggested she wait because of concerns the vaccine might aggravate the long-haul symptoms. Her doctor eventually walked back those concerns, but it didn't make Graham feel any more at ease about the vaccine.

“I'm not going to get it until I feel better,” she said.

Preliminary research does show that vaccinated and boosted individuals aren't having the lingering effects, or as severe long-haul symptoms, as those who are unvaccinated, medical professionals say.

“We're still trying to figure all that out,” said Dr. Nicholas Mathenia, director of general neurology at Edward-Elmhurst Health. “But there's been a study out of the U.K. they did on post-COVID patients with mRNA vaccines like Pfizer and Moderna versus those who were unvaccinated, and it tended to look like people who had been fully vaccinated and a booster seemed to have fewer or less-lasting or less-severe long COVID symptoms.”

Many doctors are hopeful long-haul cases will be reduced because of the vaccine, but that remains unknown.

“I wish we could tell you we had this profound discovery, but that's not the case,” Sala said.

Meanwhile, medical professionals are bracing for an uptick in long-haul cases that is expected following this recent surge of hospitalizations and cases seen throughout Illinois and the country.

“We're looking at expanding the clinic,” Mathenia said. “But it's a little too early to tell if we're going to see a huge influx of patients.”