She Survived COVID-19, but Full Recovery Seems Uncertain
Becky Aitchison was full of hope as she headed home from the hospital on April 2, accompanied by the cheers and applause of her care team. After spending seven days in the intensive care unit (ICU) at University of Vermont Health Network – Central Vermont Medical Center with a serious case of COVID-19, she no longer needed supplemental oxygen. The piercing headaches had subsided, and she’d regained her sense of taste and smell. Fifty-three years old, with no underlying health conditions, she had every reason to expect that her health and her life would soon return to normal.
Now Aitchison wonders whether she will ever be 100 percent well. She feels far removed from her pre-COVID self. That person, according to her husband, Brian, was a “strong-willed individual who could somehow defy illness. She never got sick.”
Aitchison is among an unknown number of COVID-19 survivors in our region and around the globe – collectively referred to as long-haulers or people with ‘Long COVID’ – who experience a wide range of mystifying symptoms weeks and months after infection, from the more common coughing and joint pain to the more rarely reported hair loss and inflammation of the heart muscle.
Aitchison struggles with uncharacteristic fatigue, intermittent insomnia, shortness of breath when exercising, recurring headaches and brain fog – an especially confounding condition that sometimes leaves the accomplished insurance accountant challenged to find the right words.
“I won’t call myself recovered,” she says. “I’m a survivor, and this is very much a life-changing journey. “
An Unfortunate Pioneer
When it comes to the novel coronavirus, Aitchison was an unwitting pioneer in the very earliest days of the pandemic’s arrival in Vermont. She was counted among the state’s first 35 known cases, and the first positive case for her town of Berlin. She was also the first COVID-19 patient to complete treatment at Central Vermont Medical Center’s ICU instead of transferring to the University of Vermont Medical Center.
Aitchison presented at the hospital with double viral pneumonia and low blood oxygen that was rapidly declining.
“I clearly recollect having that feeling: She might not beat this,” Brian says, remembering the sobering phone call from Aitchison’s doctor preparing him for the possibility she might be intubated and put on a ventilator. It was a great relief when she responded to high-flow oxygen through a nasal cannula instead, and began to rapidly improve.
Brian joined Becky in her hope of a full recovery when he brought her home a week later.
“I really thought there would be a defined recovery, but it kind of ebbs and flows. Her ‘COVID voice’ sometimes pops back – it’s a little bit raspy and a deeper tone that is very distinctive. And then there’s the brain fog. Becky is an accountant – she is smart, detailed and articulate – but now sometimes she has a problem expressing herself,” he says. “This thing just keeps on giving in a bad way.”
Back at her job, working remotely for the State of Vermont, Aitchison says she spends additional time using the thesaurus before sending out an e-mail to colleagues. In the evening, the brain fog rolls in with fatigue and she sometimes struggles answering the simplest questions from Brian or her daughter and son, both in their 20s. “For me that directly impacts my self-confidence and I sometimes avoid conversations when I recognize I’m a bit off and feeling irritable with frustration that I’m not my normal self.”
“I really thought there would be a defined recovery, but it kind of ebbs and flows. This thing just keeps on giving in a bad way." - Brian Aitchison
A Sense of Isolation
The Centers for Disease Control and Prevention (CDC) reports that some patients can have symptoms that last for weeks or months after recovery from acute illness. But even the people who don’t get as sick as Aitchison and develop only mild illness, the CDC points out, “can experience persistent or late symptoms.”
Early studies from around the globe reveal a wide range of findings about just how many long-haulers there are. In a recent paper published in the Journal of Microbiology and Infection, a follow-up of 150 adults with only mild to moderate COVID-19 cases showed that two months later, two-thirds of them were still experiencing symptoms, most commonly shortness of breath, loss of smell and taste and/or fatigue.
For individual long-haulers, the experience can be isolating. Aitchison says she is grateful for the “wonderful care” she received while a patient at Central Vermont Medical Center, but was disappointed there was no program in Vermont to track the progress of COVID-19 patients and manage their ongoing symptoms. Her care representative at Blue Cross Blue Shield helped connect her with a pulmonologist at Central Vermont Medical Center for a follow-up appointment and, on June 1, she had a full lung function examination.
The results came as both a relief and a puzzle. X-ray images of her lungs showed no visible scarring and various tests concluded that her lungs were functioning within normal range. Yet Aitchison continues to be bothered by shortness of breath and a tightening sensation in her chest when she goes for a 30-minute walk.
At the UVM Medical Center, the UVM Health Network affiliate hospital that saw the bulk of acute COVID-19 patients early in the pandemic, Katherine Menson, DO, a pulmonary and critical care physician, has treated similarly baffling cases.
“I’ve been seeing these patients with persistent COVID symptoms in clinic and really coming up short with any answers to offer them about what’s causing their respiratory symptoms. They are obviously feeling very scared and unsettled with how little is known,” she says.
This sense of uncertainty led Dr. Menson and her colleague, David Kaminsky, MD, also a pulmonology and critical care physician as well as a professor at UVM’s Larner College of Medicine, to start a support group.
“You Are Not Alone”
The UVM Health Network COVID-19 Survivor Support Group is open to all UVM Health Network patients who have experienced COVID-19. Virtual meetings convene monthly. This is a forum for sharing experiences, learning about the latest scientific research on symptoms and recovery, and finding resources. To register or learn more, email COVID19SurvivorSupport [at] UVMHealth.org. You will receive a link to the Zoom session via email.
The COVID Survivor Support Group is open to all UVM Health Network patients in Vermont and Northern New York and is designed as a safe space where participants can share and learn. Virtual meetings take place on the third Wednesday of every month from 5 to 6:30 pm over Zoom and are led by either Dr. Menson or Dr. Kaminsky.
At the most recent meeting, occupational therapist Kristine O’Malley and speech-language pathologist Danielle Trout discussed symptoms of brain fog, informed by their respective disciplines. Averaging about 12 participants, the meetings include time for survivors to share their experiences and ask questions.
“These patients are frustrated because a lot of doctors don’t believe that these long-term symptoms are real, and they're suggesting to patients that it's just anxiety or depression or emotional distress resulting from the illness,” says Dr. Kaminsky. “All those things might be contributing, but I don't think that's the root cause. I think there may be something the virus is doing directly to our bodies or that the immune response is doing to our bodies that's resulting in these persistent symptoms.”
The most important aspect of the support group, he adds, is to “let people know they're not alone and they are being heard.”
Aitchison was looking for a way to connect with other long-haulers, but was wary of joining one of the popular Facebook groups that have thousands of members from around the world. She was happy to find a local support group that was led by medical professionals to ensure the guidance was grounded in science.
“This support group is very affirming because before I just felt dismissed,” says Aitchison. “And because it’s led by medical professionals, it’s giving me the drive to maybe reach out and get some follow-up appointments and advocate further for myself.”
Dr. Kaminsky is also director of the Pulmonary Function Laboratory at the UVM Larner College of Medicine’s Vermont Lung Center. He is just beginning a research study there, funded by The UVM Medical Center Foundation, to track lung function in 50 participants who have had mild or serious cases of COVID-19 and now test negative for the disease. (The study is open to anyone who meets that criteria; see box for how to enroll.) The goal is to record how they do or don’t improve over the course of 12 months.
Anyone interested in becoming a study participant should contact the Vermont Lung Center, located in the Medical Office Building on the Fanny Allen campus, at (802) 847-2193. This study will be a longitudinal investigation of lung function in patients who have recovered from COVID-19. This is not a treatment study. Study participants must have had a positive COVID-19 test or positive antibodies at the time they were ill. Participants will be tested for COVID-19 prior to enrollment and must be negative to continue.
Because this is a new disease, scientific research is in its infancy and myriad studies are underway all over the world. The National Institutes of Health just announced it is launching a new database to collect information from clinicians about COVID-19-related neurological symptoms, complications and outcomes as well as COVID-19 effects on pre-existing neurological conditions.
Dr. Kaminsky believes his research will make a significant contribution to understanding how COVID-19 affects the lungs.
“I felt compelled to put together a study where we could monitor people over time for at least a year,” he explains. “We'll be learning what it naturally looks like to have had COVID. I'm testing both people who are hospitalized or not hospitalized and who have persistent symptoms or don't. We’re trying to get a broad view of how COVID is affecting the lungs. I think this is going to be unique compared to other studies, because we'll be looking at a broad cross-section of people rather than one defined group of people.”
Aitchison has just been accepted into the study and is pleased to be able to contribute to the growing body of knowledge about ‘Long COVID.’ She has twice donated her “liquid gold” convalescent blood plasma through the American Red Cross with the hopes of helping another patient recover.
The more she helps herself and others solve the mysteries of COVID-19, the more she feels like her determined, indomitable, pre-pandemic self.
“This has brought me on a life-changing journey. I’ve learned I’m stronger than I thought, sometimes I need to put myself first, accept help, speak from my heart, be open to others and, most importantly, advocate for what’s needed,” Aitchison says. The inspirational message she once proudly displayed in her office seems especially apt now, sitting in her home work space: “You never know how strong you are until being strong is the only choice you have.”