State health officials list 95% of COVID-19 cases in Wisconsin as "recovered." But that description may be a bit misleading, as the medical community estimates between 10-30% of people who get the virus have symptoms lasting for several months.
Doctors refer to those post-COVID-19 patients as "long haulers,” and more health care providers in the Milwaukee area are focusing on them.
One long hauler is Kristin Salvhus, a Racine County resident who says she tested positive for COVID-19 on Aug. 26, 2020. She says the illness was horrible, with fatigue, headaches, occasional fever and difficulty breathing. Salvhus was classified as recovered by early October, but for most of the last three and a half months, she reports having chest pain, breathing problems and a lot of fatigue.
"It's just been really hard since I'm a very active person, and I haven't been able to do much because I've either been in so much pain or I couldn't breathe,” says Salvhus.
Salvhus says she's missed a lot of work and can only be on the job for about six hours on days when she's feeling a little better. She credits relatives and neighbors for helping her out at home.
Her doctor during this long haul of extended symptoms is Julie Biller, chief of Pulmonary and Critical Care Medicine and a professor of Medicine and Pediatrics at the Medical College of Wisconsin.
Dr. Biller says what may be happening to 10,000s of post-COVID-19 patients in Wisconsin, and many more around the world, is that the virus is long gone. "But for whatever reason, the body as it was trying to contain the infection and get rid of the infection went into overdrive. It's not clear exactly what causes that to happen,” she says.
Biller says when the immune or inflammatory system is too active, there can be scarring and poor functioning of organs — enough to affect the quality of life.
"It can have an impact on productivity and having enough energy to have normal family function," she says.
Biller says many patients are morphing into a pattern similar to chronic fatigue syndrome.
Starting Jan. 28, Froedtert and the Medical College of Wisconsin are opening what they call the Post-COVID-19 Multi-Specialty Clinic. The aim is to zero in on which medications and what therapy may be best for the long haulers. Biller says inhaled corticosteroids are having some success currently.
Another local health care system, Ascension Wisconsin, opened a post-acute COVID-19 care clinic two months ago. Dr. Erin O'Tool is a family medicine physician at the clinic in Oak Creek.
"Unfortunately for the population, it's been really busy, which would suggest that there's a lot of patients looking for support for their symptoms, which are persistent beyond the typical state of illness,” says O’Tool.
O'Tool says most of the long haulers he sees are referred into at least a couple weeks of physical therapy.
“The therapy program provides them a professional that will look at their blood pressure, look at their pulse oximetry, look at their heart rate, and follow them with exercise to see how those objective metrics change with time and kind of set their milestones. 'Here's where you are today. When I see you in three days, we'll see if things get better’," he explains.
O'Tool says most of the people who go through the therapy are having good outcomes. But he says the long-term picture for many is fuzzy,
"Because we haven't had a long-term yet. So, we're learning at an exceptional pace, but there's still a lot we don't know," he says.
Biller, of the Medical College of Wisconsin, says the record of patients in New York, which had more COVID-19 cases earlier last year, may offer some hope.
"They've had patients now who are out almost 10 months, some 11 months, and a lot of them are improving,” says Biller.
Biller's patient, Kristin Salvhus said Tuesday that it's been a good couple of days, thanks to medication. "Yesterday and today is the best I've felt since August," she shared.
But Salvhus said the medicine costs her about $325 a month over what her insurance covers — yet another burden for being a post-COVID-19 long hauler.