For many who contracted COVID-19 over the past year, symptoms still linger.
Headaches, shortness of breath, muscle aches and general “brain fog” are among the symptoms patients say they’re still experiencing, sometimes even months after testing negative for the virus. That’s led to several clinics at hospitals across the country popping up to study the so-called long-haulers.
On the Anschutz medical campus in north Aurora the Post-COVID ICU Clinic at UCHealth University of Colorado Hospital is helping patients who’ve spent time intubated and on ventilators. A combination of specialty doctors help patients recover, mostly through tele-health, to regain strength and manage lasting symptoms.
But even for patients with less severe cases of COVID-19, symptoms can persist. Dr. Phil Stahel, Medical Center of Aurora’s chief medical officer, told the Sentinel he’s increasingly hearing how the virus is impacting patients’ lives months later, and there isn’t a clear reason why or how to help them.
While all viruses find ways to evade the body’s defenses, a growing field of research suggests that the coronavirus unhinges the immune system more profoundly than previously realized.
Some COVID survivors have developed serious autoimmune diseases, which occur when an overactive immune system attacks the patient, rather than the virus. Doctors in Italy first noticed a pattern in March 2020, when several COVID-19 patients developed Guillain-Barré syndrome, in which the immune systems attacks nerves throughout the body, causing muscle weakness or paralysis. As the pandemic has surged around the world, doctors have diagnosed patients with rare, immune-related bleeding disorders. Other patients have developed the opposite problem, suffering blood clots that can lead to stroke.
Stahel started at Medical Center of Aurora on Feb. 17, 2020. Then, he said, he remembers watching Dr. Anthony Fauci on CNN saying COVID-19 wouldn’t be a problem in the U.S.
That vision was short lived. Prior to the first cases of the virus appearing in Colorado Stahel had written a list of introductory meetings and people to touch base with on a white board in his office.
“Within two weeks I erased everything and wrote one sentence: Eradicate COVID, keep patient community and staff safe,” he said. “And we’re still working on that.”
A year later there’s so much still unknown about the virus and why symptoms can vary so greatly from person to person.
“Because this virus has been so enigmatic we never know — we still don’t know — who’s going to get it and be positive, who of these are going to get sick, who of these will get so sick they can’t stay home and come to the emergency department, who of these that are admitted develop respiratory failure and need to go to the ICU, who of these need to be intubated and ventilated, which increase mortality, who of these need last-resort organ replacement and who of these are going to die.”
That general lack of information that’s created such a problem for doctors and health care providers throughout the pandemic has somewhat shifted to people still experiencing symptoms.
“The problem with COVID long-haulers is that it’s a silent epidemic,” Stahel said. “We don’t know much about them. I can’t give you a number of how many we have. I can’t give you a ratio or a denominator because for us patients that are healed, they go home and they may follow up in a specialty clinic or they may follow up with a primary care physician. But we don’t know how they do three months down the road, six months down the road or even now a year down the road.”
Like UCHealth, MCA helps ICU patients recover at the Spaulding Rehabilitation Hospital. There, some people learn to walk and talk again after losing much of their strength being on a ventilator.
Stahel said he recently interviewed the first COVID patient to be treated at MCA, a Chicago woman who had traveled to Vail to ski with friends last March. Stahel said her case was so severe she had to be treated with ECMO, a treatment that pumps and oxygenates a patient’s blood on the outside of their body. Now, she says she’s still suffering a dozen symptoms.
“People don’t talk about it once you’ve had COVID. You consider the survivor and people think, ‘that’s fantastic’, which is great saving a life, but the quality of life is something that has been poorly defined,” he said. “Most recently in the literature, there’s an acronym for chronic COVID syndrome, or CCS, which means that we are slowly starting to understand that this entity exists, that these patients are vulnerable and suffering, and it is hard to heal those long term symptoms.”
The range of lasting health of effects is wide, Stahal said. The hardest to help treat are symptoms such as lack of concentration, brain fog and personality changes.
“I’ll tell you as an anecdote, those of us who’ve had the vaccine, the second shot of the vaccine gets you through what these people are suffering from for about 24 to 48 hours,” he said. “You experience that brain fog where you are just tired and you don’t know why you can’t really focus. You’re shivering, you feel some muscle pain and joint pain and 48 hours later it goes away. It was a side effect of the vaccine. And I cannot even imagine how those folks deal with that on a daily basis for weeks and months.”
Stahal said people who still experience lasting symptoms should reach to healthcare professionals out about them.
“I want to increase awareness and the threshold of speaking up and seeking care. Don’t hide in your house thinking ‘I’m just depressed’ or ‘it’s my problem.’ Escalate it to the attention of the primary care physician or the doctor that treated you. Talk to other COVID survivors and share those symptoms in terms of a support group and seek care for those symptoms. Many of these symptoms can be treated.”
And for the ones that aren’t right now, Stahal said the more they’re recognized, the sooner they can be treated.
— The Kaiser Health Network contributed to this report