dr. Luminita Tudor vividly recalls the tearful patient in her office the first day WellSpan opened COVID Care in York in mid-May.
“She couldn’t stop crying,” said Tudor, WellSpan COVID Care team leader.
Tudor added: “She just really grabbed my heart when I saw her cry.”
The patient, Tudor said, was at a loss with prolonged COVID symptoms, including chronic fatigue. For example, she would feel exhausted just brushing her teeth.
“This is a new disease,” Tudor said, noting that the disease fascinated her. “We have to do it differently.”
In the first three weeks after opening, the clinic saw 30 patients.
Initially, researchers believed that patients with persistent COVID-19 symptoms were rare. But emerging studies are beginning to reveal a dark side to the daily infection rate: Some patients continue to experience symptoms for weeks, even months, after their diagnosis.
As of Monday, an estimated 467,000 Pennsylvania residents — about 19,000 in Lancaster County alone — have what’s been called “Long COVID,” or post-COVID-19.
The condition is defined as occurring in COVID-19 patients, usually three months after the onset of symptoms that cannot be explained by another diagnosis.
Lung COVID patients are known as “lung haulers.”
COVID-19 clinics treating Lung COVID patents sprung up across the country last year in response to the need. The first clinic in Lancaster County opened in February.
Tudor estimated that about 90% of patients in the clinic improve within six months.
‘Happiness at lottery for patients’
Since COVID-19 turned everyday life upside down more than 18 months ago, the novel coronavirus has killed nearly 32,000 Pennsylvanians and about 1,200 in Lancaster County.
The daily number of fatalities masks the growing number of survivors who are experiencing long-term medical, psychological and sometimes economic consequences of the pandemic.
While it is important to note that the medical community has not reached a consensus on what constitutes a long COVID diagnosis, patients often report prolonged symptoms such as fatigue, chest pain, persistent loss of taste or smell or both, difficulty breathing, cognitive and memory problems, heart problems, and joint pain, among others.
Examples of treatments are brain games and memory exercises; breathing exercises involving the diaphragm and nutritional advice as many Lung COVID patients cannot tolerate large meals.
One of the more new exercises involves retraining a patient’s sense of smell, which involves choosing a familiar scent with good associations to sniff twice a day to help the patient remember and then smell the scent. Targeting a patient’s sense of smell can often also treat loss of taste, which is a common COVID-19 symptom that can extend to Lung COVID.
“It’s almost the luck of the draw for patients,” said Dr. Taj Rahman, medical director of Pulmonary Medicine at UPMC in Central Pennsylvania, which includes seven hospitals from Lititz to Harrisburg and York County.
Rahman added, “It can manifest in different ways for each patient.”
‘The most important thing is that we know that this population exists’
After an eight-day hospital stay – throwing and battling COVID-19 for every breath – Patty Ford asked her paramedic husband on the drive home, “Did I almost die?”
His answer was as concise as it was startling: “Yes.”
“I haven’t been sick — not even a sniff — in years,” said Ford, 50, of Manchester Borough in York County. “I thought, with no pre-existing conditions and being very healthy, that if I got COVID it would be very mild.”
She also never imagined that when doctors at WellSpan Health released her with oxygen in late January, she would still occasionally struggle to pick up words and catch her breath – months after her diagnosis.
Since opening, WellSpan COVID Care has received more than 500 patient referrals from across central Pennsylvania.
Ford is one of them.
“It’s not a patch or a quick fix at all,” Ford said of Lung COVID therapy.
Ford added: “There are a lot of people who would accept this as the new normal. I just want to get better.”
After completing the program last month, Ford said she feels she is on the road to full recovery.
While it is impossible to know how many Lung COVID patients have requested this multidisciplinary treatment, local hospitals report receiving hundreds of referrals.
All of the major health systems in the county — Penn Medicine Lancaster General Health, WellSpan Health, and UPMC — have post-COVID clinics. These clinics are run by referral and often offer virtual therapies.
Only Penn State Health, which operates medical groups and outpatient clinics in Lancaster County, does not have a dedicated post-COVID clinic.
Local health experts view the emergence of Lung COVID treatment clinics as critical to meeting patients’ needs.
“If we don’t address the symptoms now, if we don’t take care of our patients, I’m afraid there will be problems in the future,” says Dr. Tony T. Ton-That, LG’s medical director. Health’s Post-COVID-19 Recovery and Rehabilitation Therapy Program.
Ton-That added, “The most important thing is that we know this population exists.”
And Ford is grateful for that.
“I think, ‘Thank God it’s not me,'” said Ford. “Fortunately there were other people who were aware when I got out of the hospital.”