Rochester resident Deanne Engen went to bed one evening in late August feeling fine.
The 27-year-old mom and Mayo Clinic employee had tested positive for COVID-19 a week and half ago, and symptoms up to then had been pretty mild: A run-of-the-mill cough, sore throat and runny nose. She thought the disease was in the rear-view mirror.
She woke up the next morning with her symptoms a "1,000 times worse." Suddenly, her cough, runny nose, headache and fatigue were, as she describes it, "horrible."
"It was odd," Engen said. "I thought I was done with it. I was going to go back to work in a couple of days. Then I woke up the next morning, and you would think that I was a different person because I was feeling so bad."
Engen hasn't been able to return to work. Once able to walk a mile with ease, Engen was barely able to eke out a six-minute walk. Recently, while working out under the guidance of Mayo Clinic physical therapist, Engen had to abandon the effort, overwhelmed by nauseousness, light-headedness and a drop in oxygen level.
Engen's condition, post-COVID syndrome, is one that experts struggle to quantify. It's presumed to be a fraction of those infected. One estimate puts the number of COVID-19 patients who later develop chronic issues at 10 percent. But that would represent hundreds of thousand of patients, given the millions that have been infected in the U.S.
To restore her health, Engen has been attending a newly created Mayo program for recovering COVID patients and syndrome sufferers. Called the COVID Activity Rehabilitation Program, or CARP for short, it is run by Dr. Greg Vanichkachorn, a Mayo senior associate consultant for the division of preventative, occupational and aerospace medicine.
CARP takes a multi-disciplinary approach to post-COVID syndrome patients, involving specialists in occupational and pulmonary medicine, psychiatry and infectious disease.
Dr. Van, as he is known by colleagues and patients, said he began to consult with colleagues as they saw more patients with persistent symptoms. He estimates that the program has seen 20 since June, but he suspects more are out there.
These are patients that no longer have the virus, but are still suffering the withering effects of deconditioning, inflammation and other side effects of the illness.
The program serves people severely impacted by the disease, including post-ICU patients. But it also treated a Navy Seal, distance runners and people like Engen, whose symptoms started off as mild but then ratcheted up to something worse.
"She is by far not the youngest person that I've had to work with under this scenario," Van said.
The constellation of symptoms can include headache, shortness of breath, heart palpitations, brain fog and anxiety/depression, but a defining feature is "profound fatigue."
"Folks will go for a walk around the block and end up taking a four to five hour nap. Someone said it felt like all the sugar in their body was sucked out of them instantly, and they're just whipped," Van said.
It's not clear whether any of these post-COVID symptoms are truly unique to COVID-19 or spring from underlying conditions that the person already had. It's not unusual, moreover, for people who suffer any kind of serious infection to feel weak and fatigued for months afterward, experts say.
"We're still uncovering a lot of different things about this infection. We're sort of taking it day by day," Van said.
Van said the monitored program of exercise and rehabilitation operates under the the opposite of "no pain, no gain."
Mayo physical therapist Mike Trenary said the focus of COVID recovery patients is to rebuild gradually their cardiopulmonary system.
Trenary closely monitors blood oxygen levels of his patients while they work out on a treadmill or recumbent cross trainer. It's a sign that he's overworking them if it drops too low. Patients who are overworked feel their worst the next day. Many of the therapies for recovering COVID patients are done remotely via video chat.
"We can just take a patient on a short walk outside with their phone," Trenary said.
"We try to create a more gradual approach, because we can really overstress the system," Van said. "That can lead to other problems if we're not careful."
The goal: To get patients back to work and restore a patient's sense of livelihood. And some patients get to a point where a "switch flips" and they are able to get back to work, Van said. But there are currently more people in the program than have graduated from it.
Engen doesn't fit the profile of most COVID-19 sufferers in many respects. She played soccer and softball for many years. And her four-year-old daughter and one-year-old puppy had kept her active. She said she is prone to get seasonal pneumonia or bronchitis towards winter when the weather changes.
"I knew with COVID being with your respiratory, I was hoping I would never get it," Engen said. "But I kind of always thought if anybody is going to get it, it will be me because I have a tendency to get since I've been a child pneumonia or bronchitis every fall since I was a young child."
Engen has no idea how she got COVID-19. But she looks forward to a restoration of her old life.
"There's a ton of unknown with this," Engen said. "But the goal is to get to the way I was before all of this. And being able to go on walks with my dog and my daughter and not having the problems that I'm having now."