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The family of Fatima Shah Hussain is looking for answers after the 29-year-old died suddenly on Nov. 22, 2022. Relatives say she had been battling long COVID. Pictured, left to right: brother AJ Jillani, Fatima, mother Farhat Shah, and sister Amna Hussain.
The family of Fatima Shah Hussain have been looking for answers since the 29-year-old died suddenly after battling symtoms of long COVID. Pictured is Fatima and her mother, Farhat Shah.
Dr. Anupama Tiwari, a pulmonologist and director of the Post-COVID Care Clinic at Albany Medical Center, is among those who are trying to unravel the mystery of “long COVID.”
ALBANY — Nearly three years into the pandemic, scientists and doctors are still mystified by the condition known as long COVID-19.
About a fifth of Americans who had COVID-19 at some point continue to experience chronic symptoms, according to a recent survey from the Centers for Disease Control and Prevention. But doctors don’t know why some develop long COVID and others do not, and there is no known cure for the condition.
At the Post-COVID Care Clinic at Albany Medical Center, which has seen more than 900 patients in the last two years, doctors have been collecting data on long COVID to better understand its causes and develop potential treatments.
“There are floating hypotheses about post-COVID, one being that there is still some low-grade inflammation that is persisting in the body, but the whole mechanics of that is still not clearly understood,” Dr. Anupama Tiwari, pulmonologist and director of the post-COVID clinic, said.
For more information on Albany Med’s Post-COVID Care Clinic, or to schedule an appointment, call 518-262-9340.
There is no standard practice for diagnosing post-COVID syndrome, but Tiwari defines it by symptoms that last more than three months after infection.
When a patient comes into the clinic, a pulmonologist tests their lung function. If more information is needed, the patient will also undergo a chest X-ray or CT scan.
The most common health problems associated with long COVID are lung fibrosis, digestive problems, blood clots and neurological issues. Those conditions may present as fatigue, a persistent cough, difficulty breathing or a racing heart rate, Tiwari said.
Her team works with other specialists — cardiologists, neurologists and gastroenterologists — to help patients understand and manage their symptoms. Patients also have access to physical therapists and a support group to help them manage their anxiety and depression.
Tiwari’s team has observed unusual patterns over the last two years.
For instance, blood clots associated with long COVID typically start in the leg and migrate up to the lungs, so Tiwari advises patients to watch out for tenderness and swelling in the calves.
Another common long COVID complication is lung fibrosis, or scarring of the lungs, which is typically incurable. Unexpectedly, in long COVID patients, damaged lungs seem to heal with time, she said.
“Many will have a persistent cough that responds well to inhalers. My suspicion is that these inhalers might be reducing the inflammation in the lungs, and eventually they don’t need it,” Tiwari said.
A gradual increase in physical activity has also been helpful for some patients.
For the most part, long COVID patients are not acutely ill. But the chronic, and at times disabling, symptoms may interfere with their ability to work or exercise, according to Tiwari.
Frustratingly, many people living with long COVID do not have any obvious signs of illness and have trouble getting medical professionals to take them seriously.
The Rensselaer County Medical Examiner’s office has not yet made a determination in the death of Fatima Shah Hussain, a 29-year-old Troy woman who died suddenly Nov. 22, but her friends and family are convinced she died from long COVID, noting her recent health struggles in a Times Union obituary.
She had gotten COVID-19 twice, once during the alpha variant, the very first coronavirus strain that circulated in early 2020, and again during the delta surge of 2021. After her second bout with the virus, Hussain began experiencing near-constant nausea and digestive issues, accompanied by extreme lethargy, relatives said.
Whether long COVID can be deadly is controversial. State and federal health agencies do not track long COVID deaths and some medical experts say it’s impossible to say conclusively it was a contributing factor.
A new study from CDC’s National Center for Health Statistics suggests that it may have had a role in thousands of fatalities in the U.S. since Jan. 1, 2020. The authors make the case for the U.S. to adopt a unique mortality code for deaths related to long COVID.
“In the meantime, literal text, or the words describing the cause of death on a death certificate, can be used to enhance mortality surveillance beyond the (standard COVID-19) classification,” researchers wrote.
Before COVID-19, Hussain was a runner and CrossFit enthusiast. She was passionate about teaching — she had left a career in engineering to teach middle school math and science in Schenectady County schools and Hebrew Academy in Albany — but in the last year, the classroom became overwhelming and Hussain left her job, friends and relatives said.
“She was just really foggy,” her partner Daniel Morrissey said. “She was really smart and really bright and an amazing conversationalist. That wasn’t present in the last couple of months. She had a lot of trouble getting out of bed and just getting to the bathroom. She couldn’t eat because she would be nauseous. And then randomly, she’d be able to scale three flights of stairs and be fine.”
She visited specialists who ran tests, including recently, a colonoscopy and endoscopy, but the results all came back normal. She was not aware of Albany Med’s long COVID clinic, relatives said.
“She was looking for a doctor who could figure out what was going on,” her sister Amna Hussain said. “She complained about a lot of doctors not believing long COVID is even a thing.”
A week before her death, Hussain seemed better, her sister said. She had gotten a part-time job at the library and had an interview at Troy city schools. On her way home, she had breakfast with her mother and sister.
The suddenness of Hussain’s passing has been difficult to come to terms with, her sister said.
“It was like any other Tuesday. I work nights, so I was lounging around at home all day. I got up, cleaned the litter boxes, and saw I had messages from her roommate saying that Fatima had fallen down the stairs and had a cardiac arrest.”
The roommate, hearing Hussain’s fall, found her vomiting at the bottom of the stairwell, Amna Hussain said. Within minutes, Fatima Hussain was gone. Paramedics were unable to revive her.
According to the Rensselaer County Medical Examiner’s office, Hussain’s cause of death is pending. If the investigation confirms the family’s assertion that long COVID was a factor, her situation would be rare.
The NCHS report on long COVID, released recently, identifies 3,544 death certificates issued between Jan. 1, 2020, and June 30, 2022, that specifically reference long COVID as a cause or contributing factor.
The vast majority of those deaths, approximately 2,000, were people older than 65. Less than a dozen presumed long COVID deaths were people ages 19 to 30 — a figure so minuscule that the age group was not factored into the agency’s analysis.
There are several studies under way that experts hope will provide insight into the baffling illness.
The long COVID clinic at Albany Med is participating in a national study that analyzes patients’ blood samples to see if genetics play a role in whether someone will become severely ill or develop chronic symptoms.
“In the same household, a husband and wife can get sick at the same time but the husband has no symptoms but the wife is crashing for three months,” Tiwari said. “So is there something happening on the molecular, cellular level that is leading to these persistent symptoms in one individual but not another?”
The hospital is also tracking long COVID symptoms and how they evolve over the course of a year. A third study documents other diseases that were discovered at the clinic in the course of a post-COVID visit.
For example, Tiwari has encountered a number of smokers with chronic obstructive pulmonary disease, or COPD, that wasn’t discovered until they came into the clinic.
But more research is needed.
Since the clinic opened in January 2021, the hospital volume of long COVID visits has begun to dwindle as many of the original patients have recovered or have found support elsewhere, Tiwari said.
“A year later: A lot of them are getting better. What exactly helps them to get better is a good question … it’s a little uncertain how to predict who will recover and who won’t,” Tiwari said.
Between January and March 2021, the clinic saw 62 new visits per month, hospital officials said. By comparison, the monthly average of new visits to the Post-Covid Care Clinic from September to November 2022 was 12.
Tiwari urges anyone experiencing long COVID to visit the clinic and participate in research.
“When they come, they want answers,” she said. “It’s only by collecting data and with their participation that we will be able to get answers for them.”
Rachel Silberstein covers health for the Times Union. Previously she reported on education and state politics. You can reach her at [email protected] or 518-454-5449.