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Some Coronavirus Patients Find Recovery A Long And Punishing Climb

The commotion over COVID-19's direct impacts has largely drowned out alarm over its longer-term effects. But as more survivors emerge from intensive care units, a chorus of voices, many tweeting under #LongCovid, are clamoring to be heard.

"These people are not just suffering from a lung problem. They're suffering from problems with their heart, their kidneys, their liver and very, very much their brain. And that's going to pose a big problem for recovery for millions and millions of COVID survivors," said Dr. Wes Ely, an intensivist at Vanderbilt University Medical Center (VUMC) in Nashville, Tennessee.

Dr. Ely, who co-directs the Critical Illness, Brain Dysfunction and Survivorship Center at VUMC, has seen COVID-19 patients arrive with delirium, confusion and other neurological symptoms.

"We think that the virus itself may be directly causing some of these neurologic problems," he said.

But COVID-19 might also be making a bad situation worse. Because any ailment that requires an intensive care unit probably disrupts the body's supply of energy, raw materials or oxygen — losses the brain cannot easily withstand.

"It also doesn't do well when you have blood clots in the brain's blood vessels, which is happening a lot in COVID," said Ely.

ICU Impacts

Together with sleep deficits, sensory overload and powerful sedatives, such a battering can cause a condition called ICU delirium, in which patients, semi-conscious and confused, can have extreme moods and even nightmarish delusions, as Ely described.

"Feeling that they're burned at the stake; feeling like that people are out to get them and kill them; family members betraying them," Ely said. 

Some symptoms may persist as post-intensive care syndrome, or PICS. It can present as cognitive problems like memory issues, dementia, post-traumatic stress disorder and depression, and as physical problems that feel like an unshakable flu or a bad case of infectious mononucleosis, aka  mono.

Dr. Mady Hornig, associate professor of epidemiology at Columbia University Mailman School of Public Health in New York, says, in some cases, these symptoms swell and recede in jagged waves.

"There's this sort of sawtooth return of fever and what we would call malaise, where you have sort of muscle achiness and just don't feel well — have that viral infection type of feeling."

Hornig has seen cognitive symptoms similar to PICS in patients recovering from COVID-19.

"There's also a consciousness change that seems to occur in some people when you actually are testing their brain function. There is very little of the type of dysfunction that you would normally expect, but they're just not waking up. So it's almost like they're in some sort of different state, and the question is, why is that happening?" Hornig said. 

Patients sometimes self-report their psychological symptoms.

"We've heard reports of people saying, 'I'm paranoid.' They're aware that they're paranoid," said Hornig.

Post-Viral Precedents

Other viruses, too, can flare up later or cause post-recovery problems.

Dr. Carla Sevin, a pulmonary critical care doctor and associate professor of medicine at VUMC, has seen patients with acute respiratory distress syndrome (ARDS) follow patterns similar to what some call "long COVID."

"Those patients also had very prolonged recoveries — weakness, fatigue, brain fog, scary memories, nightmares, sleep disturbance," she said.

Dr. Sevin started the ICU Recovery Center at VUMC with neuropsychologist Jim Jackson. They say distinguishing whether symptoms stem from COVID causes or ICU complications takes data we don't yet have.

"We've yet to determine what exactly the signature injury in COVID is — or whether there is one," said Jackson.

Known Unknowns

Will Humble, executive director of the Arizona Public Health Association, agreed.

"Anything that we think we know about this virus in terms of its long-term consequences is really speculation and based on inferences that we can draw from other viruses," he said.

The closest relative to SARS-CoV-2, the virus that causes COVID-19, is SARS-CoV, which caused the 2003 outbreak of severe acute respiratory syndrome (SARS). Scientists are still studying that virus, and some patients still suffer the effects of SARS lung scarring to this day.

"We don't really know that much about this virus yet. We do not know, even for those people who seemingly recover, if there are going to be any long-term sequellae," said Dr. Joshua LaBaer, executive director of Arizona State University's Biodesign Institute, in a July 15 teleconference.

Even the acute phase of COVID-19 has undergone an evolving definition as additional symptoms present themselves.

"They modified the initial criteria to go from lung and fever types of symptoms, and cough, to include this change in a sensory issue, which is sense of smell and sense of taste," said Hornig.

Scientists have not yet determined if neurological symptoms stem from brain infections or emerge as a side-effect of clotting or bleeding problems and stroke-like events. They might also arise from metabolic problems, or from the immune molecules themselves, which Hornig says can act directly in the brain.

"If you've lost an area of your brain — if you've lost neurons — that's a very different scenario than if you have dysfunction," she said.

These and other gaps in our COVID-19 knowledge trace back to the virus's earliest days. As the medical community struggled to come to grips with the emerging crisis, emergency departments were too busy saving bodies in crisis to work up full medical histories.

"They couldn't breathe or became hypoxic. So their lips were turning blue and so forth. Did they have a loss of sense of smell, or did they have other symptoms? Did they have gastrointestinal symptoms?" said Hornig.

Isolation and Support

But we do know COVID-19 patients face an additional impediment to recovery. Amid the hospital shuffle of doctors, nurses, rooms and beds, most ICU patients can find stability in family. But COVID-19 isolates patients, denying them even that essential comfort.

"They're really suffering in silence. They have caring physicians and nurses, allied health professionals engaged, but they don't have family members who are so powerful in decreasing distress," said Jackson.

At home, patients who live alone struggle more to recover. Even with support, financial pressures might goad them into rushing back to work, causing a relapse or worse.

And no clear link connects the severity of the case with the difficulty of recovery.

"We've seen people who have had 'all the things,' as we say — the most aggressive life support, the most severe illness that you can survive — and they survived and they have a rapid recovery. And we have other people who had a moderate dose of critical illness, and they struggle for months or years," said Sevin.

Thus doctors can at best treat symptoms in a health system poorly equipped to handle recoveries that can take months or years.

Instead of a realistic roadmap, discharged patients receive a few weeks' worth of meds and are told to follow up with their primary care doctors. That assumes they have a doctor — or insurance. Many don't.

"So a lot of what we do with these initial early telemedicine visits are, 'Are you still taking this medicine? Did you ever get this medicine? Can you get this medicine?'" said Sevin.

Groups like Vanderbilt's can also help patients by performing neuropsychological tests, offering physical assessments and reminding people they cannot "power through" recovery.

Raising Awareness

If there is a positive in all this, it's that long COVID might help raise awareness of conditions like post-ICU syndrome and post-viral syndrome.

"There is already a broader understanding that recovery from a critical illness is not something that happens immediately and is, in fact, something that may stay with you for the rest of your life," said Sevin.

Like so many facets of this virus, long COVID shines a light on a neglected population — namely, the 25-80 percent of ICU survivors who suffer cognitive or physical impairments.

It also reminds us help is available.

"There are people in the world who are familiar with the challenges that you're having. They've engaged them for some time, and they can be a resource for you if you need it," said Jackson.

EDITOR'S NOTE: This story has been modified to correct the spelling of Wes Ely's name.

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Nicholas Gerbis was a senior field correspondent for KJZZ from 2016 to 2024.