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For COVID-19 With Long-lasting Symptoms The Road To Health Can Feel Endless

“Your whole life has changed. You can’t smell or taste, you have headaches, fatigue, nausea, racing heart, dizziness, trouble breathing and sleeping, and your memory fails you,” said Dallas resident Rachel Trammell, 41. “You are so bone-tired all the time. The level of fatigue is something I can’t really put into words.”

Trammell, a registered dietitian, wasn’t cataloging the symptoms of one of her patients; she was describing how she feels now, nine months after she was diagnosed with COVID-19.

According to Surendra Barshikar, MD, Medical Director of the Parkland Health & Hospital System COVID Recover Clinic, Trammell is one of millions of patients worldwide who survived COVID-19 but continue to experience post-COVID symptoms. Known as ‘long COVID,’ the lingering health problems triggered by the virus have created a new category of patients often called ‘long-haulers.’

“Estimates suggest that between 20 to 30 percent of people infected with SARS-CoV-2 develop long COVID-19 symptoms. These can range from GI issues like nausea and vomiting to muscle and joint pain, weakness, severe fatigue, hair loss, skin rashes, loss of taste and smell, heart, lung, kidney, cognitive, neurological and mental health issues including depression, anxiety and PTSD,” Dr. Barshikar said. “This disease can affect every organ system, head to toe.”

Dr. Barshikar, who is an Associate Professor of Physical Medicine and Rehabilitation (PMR) at UT Southwestern Medical Center, said that PMR specialists frequently manage the care of patients with chronic conditions that require a multidisciplinary approach. Many health systems, like UT Southwestern and Parkland, have tapped PMR experts to coordinate care of long COVID patients.

“Our focus is on individualized, patient-centered care involving specialists in physical and occupational therapy, heart and lung disease, neurology, behavioral health, speech language pathology, nutrition and others,” Dr. Barshikar said.

Parkland’s COVID Recover Clinic currently manages care of more than 50 COVID survivors referred internally by their physician for symptoms lasting more than 6 weeks after discharge from the hospital. The majority were severely ill in the ICU and some were on ventilators.

But, Dr. Barshikar added, even people with mild or moderate cases of COVID can have significant long COVID symptoms.

“There are many other patients recovering from COVID who receive outpatient therapies at Parkland without being part of this clinic,” he said.

“This illness is so overwhelming, you can’t identify what you need and what needs are most important. You’re not yourself,” Trammell said. “A clinic dedicated to helping manage your care is incredibly beneficial. They schedule the medical, mental health and physical rehabilitation specialists you need.”

Trammell recalled that COVID “hit her like a bus” on a Friday in late December with a high fever; 15 days later she was hospitalized

“I was a normal active person, working full-time, and following masking and distancing protocols. Pre-pandemic, I enjoyed time with family and friends and exercised regularly,” Trammell said. Now, she struggles to prepare a simple meal for herself and can’t resume full-time, in-person work. “I am grateful for the opportunity to see patients virtually while working remotely,” she said.

“If I work four hours on a Monday afternoon, Tuesday and Wednesday are recovery days,” she said. Routine chores aren’t possible because she quickly runs out of breath. “And I forget words and make odd mistakes. I have to write things down and practice them over and over. I never had to do that before. For example, one day I put clothes in the oven to wash them. Everyone knows that doesn’t make sense. Another time, I burned dinner, but I had no idea because I have no sense of smell. It can be scary.”

Dr. Barshikar said that many long COVID patients experience post-exertional malaise and have a severe energy deficit following activity.

“We work with them on a gradual reconditioning program to address the fatigue through adjusting sleep, diet and exercise. We don’t push them, just help them to do as much as they can tolerate,” he said.

Cardiac abnormalities can include elevated heart rate, low blood pressure, palpitations, lightheadedness and arrhythmia. Physical therapy can help recondition the heart muscle and restore function. COVID-19 impacts many patients’ lungs, causing severe shortness of breath, fluid or blood clots in the lungs and pneumonia. Patients may be treated with pulmonary rehab, physical therapy and medications to gradually restore lung function.

Cognitive and memory problems, often called ‘brain fog’, also plague many long COVID patients, Dr. Barshikar said. Cognitive therapy, along with assessment and therapy by a speech language pathologist, can help.

Psychosocial and mental health issues frequently impact these patients as well. Parkland instituted a four-week structured Wellness Group to help patients cope with symptoms like anxiety, depression, brain health and fatigue.

“The mental health aspect is major,” Trammell said. “Before COVID, I was a very positive, upbeat person. Now, I have a lot of depressing thoughts. There are dark times.”

Having the support of mental health professionals is vital, Trammell said.

“Validation is so important. They listen and understand. I am really grateful for all the people helping me deal with this. The COVID Recover Clinic has been a lifeline for me,” she said. “They have helped me find strategies, like pacing, setting alarms, using calendars and setting regular rest breaks to help me continue participating in day to day life.”

As the pandemic continues, Parkland’s COVID Recover Clinic team is constantly updating their approach to patient care.

“We’re working with all the other national centers and organizations, including the CDC, Infectious Disease Society of America and American Academy of Physical Medicine and Rehabilitation to share information and learn from each other. We have monthly calls with these groups to review best practices and adopt new ideas,” Dr. Barshikar said.

He pointed to a recent study published in the medical journal The Lancet Infectious Diseases showing that full vaccination cuts the risk of long COVID in half, even when a vaccinated person gets a breakthrough infection of the coronavirus.

Trammell, who contracted the virus before she was fully vaccinated, offers this advice: “You don’t want to get this disease. Listen to your doctor. Get vaccinated. Wear your mask. Because the rest of your life is at stake.”

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