ORLAND — With more than two years of the COVID-19 pandemic under our collective belt, data from the U.S. Centers for Disease Control and Prevention (CDC) indicates that over 40 percent of Americans have now contracted the virus.
And while many share experiences that the virus brought on mild symptoms with a roughly two-week recovery time, there is a portion of the population — between 10 and 30 percent of those who have had COVID — who are battling enduring and sometimes serious symptoms, known as long- or post-COVID.
Breeze Odeen, an Orland woman and mother of three, is one of those long-COVID patients, and has been since she contracted the virus early on in the pandemic, in March 2020.
Along with dealing with debilitating symptoms, Odeen has also struggled, in some cases, to be taken seriously by medical providers, and has been faced with limited information and treatment options while the long-lasting effects of COVID are still being discovered and understood.
“I had a fairly mild case of COVID,” Odeen told The American, calling the initial sickness a bad respiratory and GI illness. “I was a really active, healthy 40-year-old when I got sick. I am really, really sick now.”
After she felt like she had recovered from the initial symptoms, Odeen started experiencing trouble processing information, accessing her vocabulary and focusing. When driving to her parents’ house — 3 miles down the road from her home — she drove in the wrong direction.
She developed a racing heart, a “squeezing” sensation in her chest and shortness of breath.
“[My] doctor made a hard case for anxiety,” Odeen recalled. She entertained the idea, but with the persistence of the symptoms, she thought, “It was definitely not anxiety. It felt like somebody was inside my brain.”
As her heart issues continued, Odeen asked her provider for an echocardiogram. She got one and was told the results were normal.
Odeen then decided to switch providers and in the fall of 2020, learned from her new provider that there were abnormalities on the echocardiogram. She was retroactively diagnosed with COVID.
Odeen’s health battle was not over, but her heart issue corrected itself and she gained a provider who investigated her long-COVID concerns.
Since contracting COVID, Odeen has developed postural orthostatic tachycardia syndrome (POTS), a condition where blood volume is reduced when a person stands up, causing lightheadedness, fainting and rapid heartbeat.
She also now has dysautonomia — problems with her autonomic nervous system — along with small fiber neuropathy, which affects sensory nerves, and mast cell activation syndrome, which causes allergic reactions.
There was a time when Odeen couldn’t get out of bed for months.
It’s difficult to determine how many Hancock County residents are experiencing long-COVID, said Dr. Michael Murnik, who practices at Northern Light Blue Hill Hospital. The condition is still so new, and symptoms are often non-specific, meaning they can be traced to several other ailments.
“We’re all just learning this basically as we go,” Murnik said, adding that providers shouldn’t jump to conclusions that certain symptoms are caused by long-COVID, but to respond to those symptoms, treat them holistically and try to determine if they are a result of a COVID-19 infection.
Even if patients had a mild case of COVID — or didn’t have symptoms at all — they have just as much of a chance of developing long-COVID, Murnik said.
With research being conducted by the CDC and National Institutes of Health, “We will get more answers over time,” Murnik said.
Long-COVID clinics are cropping up across Maine, including a collaboration between Northern Light Health and Massachusetts General Hospital to set up local clinics, Murnik said. Northern Light Mercy Hospital in Portland is the main contact.
Murnik advised patients to pay attention to their symptoms and said providers will, too.
But even if health-care providers can make a long-COVID diagnosis, uncertainties may remain.
“Deciding it’s long-COVID doesn’t open some box of easy remedies,” Murnik said.
Murnik said that it appears patients often do recover from long-COVID, but that has not been the case for Odeen.
Odeen has researched her illnesses, seen specialists and has connected to support groups with patients who are also experiencing enduring symptoms. She is part of the “long-haulers” program at Beth Israel Deaconess Medical Center in Boston.
Establishing her own network, while financially straining, has been helpful while living in a rural area that does not have as much experience researching long-COVID as more urban areas, Odeen said.
But other roadblocks have occurred as she’s tried to access medical care while living in a rural town, including seeing out-of-state specialists who request blood work be done with specific labs. Odeen has even had to have traveling phlebotomists come to her house to conduct certain tests.
While some treatments, such as acupuncture, physical therapy and using a hyperbaric oxygen chamber, help with certain symptoms, not all are covered by Odeen’s health insurance and life is still very different than it was two years ago.
She spends a lot of time sitting and lying down and struggles to keep up with her three children. Her husband has had to manage the household while also working, but unlike before, she can now help him cook dinner for the family. As COVID precautions relax across the state and nation, she is fearful of getting the virus again.
Going forward, Odeen wants more health-care professionals to consider long-COVID as a diagnosis when patients present with these problems, and she hopes long-COVID gains more attention throughout the state.
She also wants her health back.
“I want to get better so badly,” she said.
Odeen recommended those who are suffering from long-COVID to access wearebodypolitic.com and a Maine long-COVID Facebook page where there are Zoom support meetings every two weeks.