By Cris Villalonga-Vivoni, Staff Writer |
Bialkowski contracted the disease about two weeks after the World Health Organization declared the COVID-19 virus a global pandemic in 2020. He was a member of the security department at Hartford Hospital, helping cover the psychiatric and emergency department, and assumes he caught the virus from his day-to-day work.
He felt as if he caught a cold at first, but within days, he ran a fever of over 104 degrees, and a coughing fit lasted for over an hour. He was rushed to Hartford Hospital and greeted by doctors and co-workers.
Memories of that day are faded and scattered for Bialkowski. But, he's fit together the pieces like a jigsaw puzzle – a bumpy ambulance ride and rapid X-ray. The doctor leans to him and tells him to call his wife; he needs a ventilator. A quick, heartbreaking goodbye to his family. The lights above him. A sea of white coats and masked faces. Then, darkness.
The next memory Bialkowski has is waking up at Gaylord Hospital over 20 days later after his body shed the virus. He spent the next 12 days trying to rehabilitate his mind, body and spirit with a series of therapies to get home and see his family.
"Hartford Hospital saved my life. Gaylord Hospital gave me my life back. That is how I sum up the whole thing," he said.
It's been over five years now, but Bialkowski, 59, is still dealing with the psychological and physical damage the COVID-19 virus left on him. At the same time, he's still recovering from chronic symptoms associated with the virus, more commonly known as long COVID, disrupting his day-to-day life.
Defining long COVID
Many long COVID patients, like Bialkowski, have learned how to deal with daily symptoms through medication and therapies, but providers still see the daily impact of the chronic disease that researchers are still learning about. Even the definition of long COVID has changed multiple times over the last few years, according to Dr. Jerrold Kaplan, medical director of outpatient and the long COVID-19 program at the Gaylord rehab facility.
Most providers follow guidance from the World Health Organization, which categorizes the condition as a range of symptoms typically starting within 3 months of an initial COVID-19 illness. It's a continuous, relapsing and progressive disease affecting multiple organs at a time and symptoms lasting for weeks, months and, sometimes, years, impacting daily life.
Gaylord started the long COVID program early on in the pandemic after doctors noticed several of their discharged patients continued to report symptoms, Kaplan said. The various needs prompted the staff to approach care multidisciplinary, often prescribing different physical, speech, and neurological therapies.
"We have to really look at the whole person...all the different connections with the different organ systems," Kaplan said.
The way long COVID behaves in patients depends on the individual. Kaplan said long COVID patients described at least 200 different symptoms, the most common including chronic fatigue, heart palpitations, dizziness and breathlessness. A Yale University-led study recently found that one in 10 of its 3,500 long COVID patients dealt with five or more symptoms.
According to the Centers for Disease Control, no lab tests can determine if long COVID causes a patient's symptoms since clinical evaluations may still appear normal. A diagnosis is instead given based on a patient's health history, health examination, and whether they had a positive COVID-19 diagnosis.
A study in Nature Medicine, a national peer-reviewed journal, found that over 400 million people worldwide developed long COVID at some point. The new long COVID cases rate has decreased over the years but is still a major concern considering the number of people impacted.
Waking up in a new body
Bialkowski has been to over 350 doctor's appointments, consultations and therapy sessions since he woke up from the ventilator, the majority of it to do with the chronic, recurring symptoms he felt once he got home.
"This pandemic changed me, physically, mentally, emotionally, psychologically, and they're all different," he said.
His lungs took the brunt of the COVID-19 infection, resulting in scarring. In addition, Bialkowski said the virus destroyed cells in his muscles, leaving him feeling physically weaker. Walking upstairs, for example, he said, is nearly impossible without staggering, "sucking wind," and feeling like his "legs are 1,000 pounds a piece."
This was a major change for Bialkowski, a former NCAA gymnast and a career state police officer with the Department of Mental and Addiction Services and at Hartford Hospital. Bialkowski said he's given up on several passions because his body and mind can't keep up with the physical limitations, like being a high school softball umpire and hockey referee.
The physical limitations also led to worsened mental health issues. At the same time, he said that he was dealing with a new severe fear of tight spaces, anxiety, post-traumatic stress disorder and brain fog that sometimes makes him forget even his name.
The severity of the chronic symptoms lessened over the years, especially as Bialkowski found compromises to continue participating in activities he enjoyed. The fatigue and exhaustion are still a part of his daily life, so he schedules long breaks to recover after physical activity. He also started working again at the hospital but part-time so that he wouldn't over-exert himself.
Still, he said it took him a long time to accept his new reality.
"I used to be in the left-hand lane, going 100 miles an hour. Now, I just turned 59, I'm in the right-hand lane, or the breakdown lane. The cruise control was on 45 and I'm good with it," he said. "I have had to re-evaluate everything that I used to be able to do what I can do now, and try to mesh those together and accept it."
Not having answers
Spending time at the barn before hosting a horse-assisted therapy session is both a moment of peace and exhaustion for Kate Nicoll. The Wallingford resident said she works to help clients by offering therapy and helping them with barn chores, like grooming, cleaning and feeding. Throughout the session, however, she needs to take multiple breaks to minimize her nerve pain.
A former health care professional, Nicoll said she's experienced several symptoms since 2021 ranging from brain fog to chronic fatigue to digestive issues. Many of these problems Nicoll has dealt with before, but she said symptoms became more severe post-COVID and following her vaccine.
According to records viewed by CT Insider, Nicoll has a long history of complex medical needs, like recurrent transverse myelitis or spine inflammation, that left her partially paralyzed after recovering from mono in 2002, among other issues.
She received the COVID-19 vaccine early into the rollout in 2021. Around a week later, Nicoll started having balance and walking issues and was admitted to the emergency department with high blood pressure. Nicoll said she also noticed having high blood pressure issues and chest pains. Doctors agreed that her symptoms worsened post-vaccine according to her medical records and, more recently, one diagnosed her with a COVID-19 vaccine injury.
COVID-19 vaccine injuries have been reported in the past since its rollout in 2021, but it's extremely rare, according to the National Institute of Health. Despite the injury, Nicoll said she doesn't regret getting a vaccine, knowing that the virus would've killed her when she caught it in 2023.
Her daily chronic symptoms, many of which align with long COVID research, would fluctuate and flare up at random, leading to over 40 emergency room visits. Because she already had a lengthy medical history, connecting COVID or a vaccine injury to her worsening symptoms proved to be a challenged because of limited research for a doctor. Nicoll, however, remained convinced it was all connected and visited several doctors along the way.
"I was advocating because I was terrified. I was terrified," she said. "There were wonderful people who got that and would sit with me and try and talk through with me. And then there were others that just would not. If it wasn't in a published journal article up to date, it didn't exist."
It's been a long journey but Nicoll said she now has a care team that she trusts, but still challenges and pushes. She works with 26 doctors – from physical and speech therapy, long COVID clinics, other specialists and medical consultants. As of the new year, she said that she's been to 98 medical appointments and is taking multiple medications, including weekly immunoglobulin infusions.
Although she continues to volunteer at school and in the equine program, she said the day revolves around her bathroom schedule due to ongoing issues. She also still can't stand for more than 10 to 15 minutes at a time with severe nerve pain and often relies on a power wheelchair.
"I was just like at our barn, like for three hours last Saturday, where I sit, stand, sit, stand...then I went home and slept for six hours," Nicoll said. "Having an invisible disability where you look okay and I certainly talk okay most of the time, but the level of impairment people just don't believe...it's just such suffering."
Unknown future
Kaplan said research around long COVID is at full steam, focusing on studying the same patients for long periods to see how the chronic disease develops over the years, also known as longitudinal studies.
There are also several research efforts to identify the exact cause of long COVID and why some people are more impacted than others, Kaplan said. Some theories circulated range from long COVID being a viral reactivation to a chronic inflammation issue causing the symptoms. But, he said it may take years before there's a clear answer.
However, the future is uncertain with recent changes to federal research funding.
The National Institute of Health offered more than $35 billion in medical research grants to over 2,500 universities and other institutions in 2023 across the U.S., but a new policy aims to cut costs.
In addition, the Office for long COVID Research and Practice, a government entity driving most of the federal interdisciplinary efforts around the virus, was ordered to close in late March by the Trump Administration, according to Politico.
"I'm hopeful that people will have more of a long-term view and will allow a lot of these long COVID studies to continue," Kaplan said. "My impression is that the studies are going to have to go on for several years to really understand long COVID and how we can best treat it."
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