For many Idahoans experiencing the effects of post-acute COVID-19 symptoms after their infections, finding a physician to work with has been difficult due to the relatively new phenomenon of COVID-19.
One such resident in eastern Idaho is Jana Merkley, chief executive officer for the Snake River Regional Multiple Listing Service, who had to travel to Boise to the COVID-19 clinic at St. Luke’s Hospital to get medical help when she first realized she had post-acute symptoms. Merkley, 58, said she first tested positive for COVID-19 in February 2021 and she didn’t understand why her symptoms persisted after the typical infection window of the virus.
“At first you think you’re crazy, ‘like what’s going on with me,’” she said. “It can’t be COVID.”
Post-acute COVID-19 syndrome, sometimes called long haul COVID-19, is a condition that results in ongoing health problems after a person is infected with COVID-19 and was classified as a disability in July 2021. According to the Centers for Disease Control and Prevention, it usually persists after a severe COVID-19 infection and among people who haven’t been vaccinated.
Much is unknown about post-acute COVID-19 including why it occurs. About 10% of people infected with COVID-19 have developed post-acute symptoms and of those who have it, 13.3% are reporting symptoms one month or longer after infection, 2.5% at three months or longer and more than 30% at 6 months among patients who were hospitalized, according to the CDC.
The Lancet journal on Thursday reported that a study of more than 76,000 people in the Netherlands found that one in eight people who have experienced COVID are likely to have experienced long-term symptoms at least three months after their initial infection. The Lancet is an independent, international weekly general medical journal that was founded in 1823.
Shortly after looking into her symptoms and finding other people who experienced similar symptoms, Merkley determined she had post-acute COVID-19. She initially looked for a clinic near Idaho Falls that treated post-acute COVID-19 patients but was unsuccessful. St. Luke’s Hospital later confirmed her suspicions with an official diagnosis and she’s had telehealth appointments with a St. Luke’s physician since then.
“I’m lucky because for the initial hour and a half doctor’s appointment, you have to go to Boise but then after that you can do telehealth visits and I can do all my testing here,” Merkley said.
Another COVID-19 long hauler, Travis Smith, said it’s important for people experiencing post-acute COVID-19 to advocate for themselves because sometimes symptoms have been dismissed by family members or physicians who believe a patient is going through something else.
“Especially early on during the pandemic, a lot of doctors were quick to disregard what long haulers were starting to deal with,” Smith said. “I was told when I was seeing a doctor over and over ‘well it can’t be COVID. COVID has shed out of your body at this point so you’re dealing with something else’ and that’s very difficult to hear.”
Smith is the founder of the Idaho COVID Long Haulers Facebook group, which he said is a support network for people experiencing post-acute COVID-19 and has about 1,500 members.
But the general physician response to post-acute COVID-19 patients is changing. East Falls Internal Medicine started accepting post-acute COVID-19 patients Thursday at its COVID-19 clinic, run by Dr. Kenneth Krell.
Awareness around post-acute COVID-19 has increased among primary care physicians, which Krell said has led to the creation of more COVID-19 clinics in the U.S. as doctors are learning the best ways to run clinics of their own.
“I’m optimistic we’re getting past the point where patients’ symptoms are simply dismissed and patients are told that it’s just that they’re anxious or that they’re depressed or that’s it’s all in their head,” Krell said. “Those symptoms are very real and represent ongoing dysfunction that’s important and biologically based.”
Krell recently retired from Eastern Idaho Regional Medical Center’s intensive care unit and now works as the program coordinator of the East Falls Internal Medicine COVID-19 clinic. East Falls Internal Medicine is a medical residency program that employs medical students in their final year of school to give them practical experience in the fields they plan to pursue in their careers.
Because the SARS-CoV-2 virus involves nearly all of a human’s organ symptoms, post-acute symptoms can vary and be vastly different among patients, Krell said. Common symptoms include respiratory, cardiovascular and digestive issues, the CDC says. RecoverCOVID.org has counted more than 200 symptoms associated with long haul COVID.
Krell said there are still many unanswered questions about why symptoms persist after COVID-19 infection. Studies have shown the virus can isolate and hide within certain tissues in the body, resulting in ongoing viral replication. Symptoms also can be related to an immune response to initial infection where the body continues an immune response to a protein that’s been altered by the virus and some symptoms are a result of acute damage directly caused by the virus.
Despite COVID-19 vaccinations not being as effective against new strains of the virus, Krell said he highly recommends vaccination because it dramatically reduces the odds of a person needing to be hospitalized or dying due to COVID-19, and post-acute symptoms are more likely to occur in those with severe infections.
Merkley said she’s constantly felt exhausted and has had headaches, congestion, a sore throat and body aches for the last year and a half. The worst symptom she said she’s felt is neuropathy, which typically results in numbness, tingling, muscle weakness and pain.
For many living with long COVID-19, they’ve had to completely adjust their lives. Merkley said her social life is gone now and she’s had to give up many things she used to do. She said she highly appreciates that she can still continue to work, something many post-acute COVID-19 patients don’t have the luxury to do.
“Many of those patients are not able to continue, for instance, employment,” Krell said.
The New York Department of Health published a presentation on post-acute COVID-19 rehabilitation from Mt. Sinai Hospital that found 62% of patients have had to change their employment status as a result of their condition. Krell said he’s seen estimates that up to 12% of patients may be unable to maintain any kind of employment.
Some patients have gone on to recover from post-acute COVID-19 symptoms but others, such as Kathryn Ririe from Rexburg, have been told they may have permanent damage to their bodies as a result despite reporting improvements with their symptoms.
“My lungs are definitely still damaged. I think they’ll be damaged for the rest of my life,” Ririe said.
The lung damage has changed how Ririe approaches many of the things she loves. Hiking is now much more of a challenge and her participation with her choir group is limited as she said she sometimes whistles to learn her part to avoid strain on her lungs.
But things are better since Ririe first found out she was a long hauler in early 2021, she said. Ririe has become healthy enough to stop taking more highly intensive prescriptions and she delivered a healthy baby in February.
Others, including Smith, who have found themselves with post-acute COVID-19 had pre-existing health conditions before contracting the virus. Smith has been diagnosed with supraventricular tachycardia since he was 8 years old, a condition that results in an abnormally fast heart rhythm due to improper electrical activity in the heart.
Smith said he’s had to learn how to live with the more intense and frequent feelings of tachycardia that post-acute COVID-19 syndrome has led to. Sometimes, seemingly at random, his heart rate will increase to 140 to 160 beats per minute even though he’s simply working at his desk, he said.
“When the episodes get really bad, it feels like my heart is trying to crawl out of my ribcage,” Smith said.
Krell said he encourages anyone with post-acute COVID-19 symptoms to seek treatment from primary care physicians and specialty clinics since symptoms seem to improve over time for many patients.
“We can do some things to hasten that recovery with graded physical therapy, with cognitive training, sometimes with specific drugs and with help from a social system,” Krell said. “This is not a hopeless situation. This is not a situation where we can’t do anything and supporting those patients through that journey is important and helpful.”