Eight months into the coronavirus pandemic, Colorado doctors and scientists have a growing study sample: tens of thousands of people in the state who have survived COVID-19.
Their initial findings are beginning to trickle in, helping piece together the long-term effects of a virus that has killed more than 2,300 Coloradans and infected more than 200,000.
The first long-term study of COVID-19 Colorado survivors, from UCHealth, is finding that about one-third of highly symptomatic patients who survive reported that after six or seven weeks, they were still struggling.
Knowledge about COVID-19 survivors is emerging, too, from new hospital clinics set up specifically to help patients recover from the infection that attacks everything from the lungs to the brain.
National Jewish Hospital has a “respiratory recovery clinic” for COVID survivors, focused not only on physical healing, but also on emotional issues. And at a new post-COVID, out-patient clinic at UCHealth University of Colorado Hospital in Aurora, a team of doctors is working with patients recovering from a stay in the ICU, as well as those who never were hospitalized but are “long-haulers,” with symptoms that have persisted for months.
The UCHealth study found that long-term symptoms include brain fog, muscle aches, impaired breathing and blood clots, said Dr. Robert Lam, an emergency medicine specialist at UCHealth Memorial in Colorado Springs who is leading the study. Lam’s team has also noted patients have faintness after standing up, a condition called postural orthostatic tachycardia syndrome or POTS.
Lam is employing University of Colorado medical students, locked out of clinical work because of virus precautions, to follow up with a running total of 150 patients who initially sought help for COVID-19 at an ER, clinic or inpatient hospital.
When the pandemic first spread, providers assumed the course of the virus would follow that of pneumonia infections or various versions of the flu, with an acute illness followed by a quick recovery. They expected some COVID-19 patients might need oxygen once home, as pneumonia patients sometimes do, Lam said.
Instead, the ongoing aches and inability to exercise beyond a walk to the mailbox seem to dominate the lives of the long-haulers, Lam said. “This is unique, to see patients still struggling six to seven weeks beyond hospitalization.”
What has surprised providers and the medical students, Lam said, is the high percentage of long-term patients reporting mental health issues after their hospital stays. Patients feel traumatized by the intense isolation required by COVID-19 protocols, by a fear of reinfection, by fear of infecting loved ones and by having to avoid family or work while they are recovering.
“We are hard-wired to connect with people,” Lam said. The results so far reflect other studies showing about 1 in 5 virus recoverers develop a significant mental health condition as a result of their illness.
While the UCHealth Memorial team has started presenting its results, and data from the study will appear in January’s edition of the peer-reviewed Journal of Investigative Medicine, the health system is already altering patient care. Particularly in regard to mental health, Lam said, patient responses to COVID-19 make it clear hospitals need to begin linking people to mental health resources and reconnecting them to community before they’ve left the hospital.
Patients are also shown videos about the need for taking blood thinners to combat stroke and heart attack-inducing blood clots once they are back home.
Interviewing COVID-19 patients, which is time consuming, has turned out to be a supplemental education for medical students, Lam said. They’re not likely to get a better example of communication as therapy, he said.
“The healing process just includes talking to your patients,” Lam said.
Clinics open for “long-haulers” and ICU survivors
For months prior to the pandemic, Dr. Sarah Jolley, a pulmonary and critical care specialist at the University of Colorado School of Medicine, had been working to create an out-patient clinic for former ICU patients. Coronavirus sped up her timeline, and what was supposed to become a post-ICU clinic is now almost exclusively a post-COVID clinic.
The clinic has seen about 80 COVID-19 survivors so far, and another 5-10 who never had the virus.
Post-ICU clinics exist in a few hospitals around the nation to help patients regain their strength after spending weeks or months in a hospital bed. Patients who were in intensive care and intubated often need respiratory therapy and neuro-muscular rehab, and sometimes speech therapy, Jolley said.
Other common lasting effects are psychological. Patients who have been sedated with psychotropic drugs often hallucinate, and their memories when they awake don’t mesh with reality. They sometimes believe, for example, that they were kidnapped and tied to a bed, she said. Doctors call it “ICU delirium.”
“Often we have to restrain patients to keep them from pulling out a breathing tube, and so patients can remember that in unusual ways. Feeling kidnapped, feeling attacked,” Jolley said.
And with COVID, there’s the added stress of waking up to see a nurse or doctor in head-to-toe personal protective equipment staring down at the hospital bed. Having family at a patient’s bedside helps with ICU delirium, but during the pandemic, patients aren’t allowed in the room. “We are actually seeing more delirium than a typical ICU survivor population,” Jolley said. “This has all been exacerbated in the setting of COVID.”
Besides the delusion, there is depression that can set in when patients realize they’ve missed a chunk of their life while they were unconscious, she said.
The out-patient campus at Anschutz Medical Campus is treating more COVID-19 patients than just those who were hospitalized in intensive care. Others are coming to the clinic because months after contracting the virus, they still feel numbness and weakness in their arms and legs, extreme fatigue, brain fog and confusion, and mental health struggles, Jolley said.
“We’ve seen a number of people who were very high functioning, very athletic, … who now are very limited — people who previously could climb mountains who have a hard time walking down the street because they get so short of breath or they get so winded,” she said.
The more doctors learn though, the more they realize how much they don’t yet know. “We’re still trying to understand what those symptoms mean and how much of that is really virus related versus we’re not sure what as a medical community,” Jolley said.
A multidisciplinary team — everyone from the pulmonologist to the psychiatrist — meets every other week to discuss the clinic’s patients. Their treatment plans are specific to each patient, whether they were on a ventilator and now need help re-learning to swallow, or have vocal cord damage, or need a step-by-step exercise plan to increase lung capacity. Because of the pandemic, some of the rehab happens via telehealth.
When the pandemic finally ends, Jolley plans to turn her out-patient clinic into the post-ICU recovery center she had initially planned. The hospital also has an in-patient rehab clinic for COVID-19 survivors who have recently left the intensive-care unit.
As coronavirus cases and hospitalizations skyrocket in Colorado this month, Jolley encouraged people to remember that dying from COVID isn’t the only thing that should scare them.
“Death isn’t the only endpoint,” she said. “It’s important that we think about what recovery looks like as well. Just because you survive COVID doesn’t mean that you may not have issues over the longer term.”