The ‘long-haulers’: Why ‘presumed recovered’ doesn’t mean you’re done with the coronavirus | Coronavirus

Dr. Shaban Faruqui, strapped into a gurney, rolled down the hallway five months ago at Baton Rouge General Medical Center to cheers and applause from the hospital’s employees.

It was May 18, two months after he was hospitalized with the coronavirus. As the former chief of gastroenterology at the hospital, everyone had been rooting for him.

He had survived the worst of it and was going home. To a wife of 45 years, to three daughters and four grandchildren who had hung paintings of hearts and sunny skies on the walls of his Baton Rouge home to greet him.



NO.presumedrecovered.adv 008

Dr. Shaban Faruqui and his wife and three daughters in 2015. 




When he arrived home in the ambulance, Faruqui’s fingers fluttered with urgency when he saw his wife. She grabbed his hand. A doctor herself, she would oversee his care as he recovered.

That day marked what the Faruqui family thought would be the end of a long struggle with the coronavirus.

It wasn’t.

What they didn’t realize then, and what is becoming clear to some other coronavirus patients and their families, is that the fight for survival doesn’t end when a patient leaves the hospital.

Presumed recovered

On the Louisiana Department of Health website, a hopeful green number ticks up each week in the left corner of the state’s coronavirus dashboard. It represents the many “presumed recovered” people who survived their initial infection. There are 161,792 of them in Louisiana as of the most recent count.

The state considers someone recovered if they meet one of two criteria. Either it has been more than 14 days since they tested positive and they aren’t in a hospital or dead, or if they are still alive 21 days after a positive test.

The assumption baked into the dashboard is that people are through the worst of the infection if they’re out of the hospital or a few weeks out from the initial sickness. The majority of people recover in that time period.

But the metric was created before there was an understanding of the continuing coronavirus-related symptoms that some people face. And more and more, doctors say that many of those “presumed recovered” patients still are far from certain to have a full recovery.

“I don’t presume all those people are recovered. A lot of those people are still sick,” said Dr. Josh Denson, a pulmonologist who in March treated the first severe case of COVID-19 that occurred at University Medical Center in New Orleans.

A 31-year-old woman checked in to a New Orleans hospital this spring after five days of fever, cough and stomach pain. Hospital workers stuck …

While COVID-19 affects the respiratory system — shortness of breath, low blood oxygen, pneumonia and acute respiratory distress syndrome in severe cases — mounting evidence shows it can impact a number of different organs, in some cases leaving behind undetectable damage or persistent problems that can turn severe weeks later.

Some of these people are known as “long-haulers” — otherwise healthy people who just can’t seem to get better. Others may be experiencing post-intensive care syndrome, a constellation of symptoms that can haunt survivors of critical illness.

“It is becoming very clear now, across the world, people who get infected with COVID can have protracted and nagging symptoms for weeks and even months afterwards,” said Dr. Joe Kanter, the interim assistant secretary of the Louisiana Office of Public Health. “Long after the infectious period has ended and, for people who were hospitalized, long after severe illness resolves.”

Most people recover from COVID-19 after a few days or weeks. But early studies suggest 10% have lasting symptoms. A study of 143 hospitalized patients in Italy found about half had fatigue and trouble breathing two months after leaving the hospital.

Young, healthy people can suffer for far longer than even a bad flu, a Centers for Disease Control and Prevention study found. One in five adults between the ages of 18 and 34 said they didn’t feel back to normal two or three weeks after their diagnosis.



NO.presumedrecovered.adv 005

Dr. Shaban Faruqui and one of his four grandchildren in July 2019. Faruqui was hospitalized with coronavirus in March 2020. 




For older, hospitalized patients like Faruqui, experts say there’s more of a risk. Before he got sick, Faruqui, 67, was an active father and grandfather. He was known to climb inside a playpen with his grandchildren. He saw patients two days per week at West Feliciana Parish Hospital in St. Francisville. He spoke to his daughters nearly every day.



NO.presumedrecovered.adv 006

Dr. Shaban Faruqui and his granddaughter in May 2020, shortly after he returned home from the hospital after being treated for coronavirus. 




But after leaving the hospital, he was relearning to walk. One nurse helped him grip his walker and another inched behind them with a wheelchair, just in case he fell. He had nightmares of paralysis after weeks of heavy sedatives and occasional restraints.

His voice was weak and he still couldn’t taste anything. Pistachios, he told one daughter, tasted like stones.

His continued symptoms were just some of what patients can suffer after the onset of the disease. Studies have shown several other worrying problems:

  • A growing body of research is showing that patients may have cardiac effects, even if they were not sick enough to be hospitalized.
  • About half of patients admitted to the hospital for COVID-19 had kidney damage, according to a study of 4,000 patients from Mount Sinai Hospital System in New York. Of those, 82% had no prior history of kidney problems.
  • CT scans of the inside of patients’ lungs show that even asymptomatic people can have lung damage, according to the peer-reviewed journal Nature Medicine.

“There are people who are not even ending up in the hospital but still developed pulmonary fibrosis,” said Denson, referring to lung tissue that has become scarred and stiff, making it hard for lungs to expand. “We’re definitely seeing it, but it’s still too soon to identify how to approach it.”

‘It’s done its damage’

After 112 days in the hospital, Darrell Sullivan lost track of time.

“I forgot it was summer,” said the 59-year-old, looking equal parts overwhelmed and reawakened as he was wheeled down the long hallway connecting Tulane Medical Center to the parking lot, oxygen in tow.



NO.presumedrecovered.adv 010

Darrell Sullivan is greeted by his twin sister on July 23, 2020 after spending 112 days in treatment for coronavirus. After his breathing worsened two months later, he returned to the hospital on Sept. 30. 




Sullivan had been in the hospital since the beginning of April. He was discharged at the end of July after trying almost every therapy: antibiotics, hydroxychloroquine, remdesivir, convalescent plasma and intravenous immunoglobulin.

By then, hospitals stopped marking an exit with applauding workers. A nurse brought him to the garage, where his twin sister, Darlene, waited, arms spread wide.

But she couldn’t even give him a fist bump. Her brother tested positive for the coronavirus for almost four months. Sullivan has a slow-growing type of lymphoma, which made his immune system weak. Doctors think that’s why his body just can’t clear the virus.

Back home in Grand Coteau, the former hospital chaplain resident still needs help breathing. A machine in his dining room pumps oxygen through a 50-foot tube that follows him around the house.

The coronavirus pandemic in Louisiana has marked some of the deadliest months on record for the state. From March 1 to August 1, about 24,000 …

“If I have a list of things to do that normally takes a day, I give myself a week,” said Sullivan. “If I just water my plants and clean my fridge, that would be a big day.”

In September, Sullivan’s breathing worsened. Two months after he left Tulane, back he went, where he has remained for almost three weeks.

“A lot of people don’t realize, even if the virus is gone, that doesn’t mean you’re done with it,” said Sullivan. “It’s done its damage.”

Neurological symptoms persist

Sullivan hopes to get his taste back, because “for a Cajun, that’s a big deal.” He still gets what he calls the “COVID taste” when he eats certain foods — “like a bad brown gravy.”

Anosmia, or loss of smell and taste, is one of many neurological manifestations of COVID-19. Brain fog — a benign term for the memory loss and symptoms of dementia some experience — dulls the thoughts of some long-haulers.

Kerri Morrison, a 49-year-old Ochsner Health System transplant coordinator who tested positive for the coronavirus in March, said “brain fog” doesn’t capture the extent of it.

When her son got into a minor car accident in June, he called her to come pick him up. It took her three times to get on the interstate correctly from her home in Metairie.

“I couldn’t figure out how to get to the Smoothie King Center,” said Morrison. “I’m from here.”

“It’s like putting your underwear over your pajama pants. It’s like the processing and steps,” she said.

After a well-earned break following six weeks treating coronavirus patients in the University Medical Center ICU, Dr. Kyle Happel, a pulmonolo…

Mental health issues impact many coronavirus patients, regardless of the severity. The impact is especially rough for the long-haulers, who despair that they’ll never get better and experienced what Morrison called “medical gaslighting” in the early days of symptoms when she was trying to figure out why she had blotchy skin, extreme fatigue, black toes, sores, rashes and blisters.

“Everyone I saw was like, ‘Go back under the rock you came from. We don’t know what to do,’” said Morrison.

Research for those who don’t get better

Liz Frank, 48, had fallen ill at work with fatigue and stomach cramps in April and had a low-grade fever, but she told friends she was feeling better after five days.



BR.presumedrecovered.adv TS FIRST 394.jpg

Surgical nurse Liz Frank, who decided to work on a hospital’s COVID-19 floor after elective surgeries were halted in March and was diagnosed with COVID-19 in April, photographed Tuesday, Oct. 6. 2020. Despite her recovery, she is not ‘out of the woods’ yet, one of many survivors who still have symptoms including fatigue, nerve pain and brain fog. Her doctor and employer have recommended that she find a job that is less physically demanding.




But the next day, the cough came. Then body and joint aches. Then a shooting pain, like an electrical current.

“My skin got to the point to where it felt like a nerve type of pain — almost like my skin was burned,” said Frank, who normally works as a cardiovascular surgical nurse at Our Lady of the Lake Regional Medical Center in Baton Rouge, but volunteered to work on the COVID-19 floor when operations ceased.

And then her third test came back: positive for the coronavirus.

“I felt like I was 90 years old,” she said. “You’re just so completely drained of energy. It has taken a lot of time to get back to a point where when I go to the grocery store I don’t need to have someone else push the cart for me.”

Weeks, then months passed. Frank tried to return to work several times, but she could hardly put in a half shift. A single mom, she was counting on her regular paycheck to support her two kids as medical bills increased, but the swelling in her joints made it impossible.

After two months of back-to-work attempts and a conversation with human resources, Frank is looking for a less physically demanding position.

“I’m a bit scared and sad,” said Frank. “Is it going to impact the rest of my life that much?”

‘We don’t know’

While researchers’ understanding of the long-term impacts of the coronavirus have developed since January, other viruses suggest a prolonged illness is not unusual.

“Take varicella — chickenpox,” said Dr. Angela McLean, a professor at LSU Health New Orleans School of Medicine. “You can have that and 30 years later you can develop shingles. Will there be something that happens 50 years down the line? If someone becomes immunosuppressed, will COVID pop up and rear its ugly head? We don’t know.”

And then there are the symptoms doctors still can’t explain.

Christi La Mark knew something was wrong when her husband, Alfred, came home early from his job as a Walmart department manager on March 24.

Seven months later, he still can’t mow the lawn, wash his car or even take short shopping trips. And aside from an initial positive coronavirus test at the hospital in March, doctors are unable to explain his lingering gastrointestinal symptoms and fatigue.

Sixty pounds have fallen off his 6-foot-7-inch frame since March.

“On a good day, he’s at 55% of where he was before,” said La Mark, a senior program manager at the Institute of Women and Ethnic Studies in New Orleans. “If he’s not at work, he’s sleeping.”

Test after test has shown no abnormalities in blood and stool samples.

“Initially, I said this is nothing like COVID, he has none of the symptoms,” said La Mark. “As we learned more about it, we learned people do have digestive issues, and we’re not an outlier.”

Science is starting to catch up to what coronavirus patients know firsthand. Ten months into a pandemic is a disease still in infancy and there is much to be learned.

Dr. Dahlene Fusco, infectious disease expert at Tulane University, is starting a post-COVID-19 clinic at Tulane. They’re enrolling 1,000 people in a study funded by the CDC to track lingering symptoms in people with a proven diagnosis.

“We may find everyone should also be seeing a cardiologist,” said Fusco. “We’re seeing people coming back to the hospital with new events and wondering if outpatient follow-up would provide clues.”

But even clinical follow-up might not catch lingering health issues during the long recovery.

Faruqui, the Baton Rouge doctor, was surrounded by doctors at home, including his wife and two of his daughters. His ICU doctor would stop by just to check on him. He visited a cardiologist three weeks after leaving the hospital. He was on blood thinners to prevent clotting. 



NO.presumedrecovered.adv.001.jpg

Dr. Sabeen Medvedev poses with a photograph of her father and mother at her home in New Orleans, Wednesday, Sept. 16, 2020. Her father, also a physician, was hospitalized for two months with COVID-19. 




“He couldn’t have been more monitored, honestly,” said Dr. Sabeen Medvedev, one of his daughters. “He had ICU nurses coming every day taking his vitals.”

Five weeks after he was wheeled out of the hospital, well enough to go home, Faruqui went into cardiac arrest.

He died on the way to the hospital. Doctors in the emergency room couldn’t bring him back.

Nobody saw it coming.

His daughter, a gastroenterologist in New Orleans, has agonized over whether she could have saved her father, going over every conversation they had about his symptoms: Was his shortness of breath a clot? Was his shoulder pain, chalked up to an old rotator cuff injury, actually a cardiac symptom? Was his inability to taste a sign of neurological damage?

Medvedev has tried to put the pieces together — her way of processing the loss.

“My dad was the glue,” she said. “We were all obsessed with my dad.”



NO.presumedrecovered.adv.003.jpg

Dr. Sabeen Medvedev poses at her home in New Orleans, Wednesday, Sept. 16, 2020. Her father, also a physician, was hospitalized for two months with COVID-19. 




A doctor who treated Faruqui in the ICU and received him in the emergency room had seen four cardiac arrests in patients who had been discharged, he told Medvedev.

“The most disturbing thing was that this happened when we thought we had cleared the biggest hurdle,” said Medvedev. “It just never would have occurred to me that this would ever happen to him. He survived the hardest thing you could survive.”

Source Article