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Some COVID-19 long haulers have had symptoms since the first wave. Can they still get better?

While they’re grateful to be alive, they’re unsure of what the future holds.

Joy Ezekiel-Gibson, 47, poses at her home in Atco, NJ.  Joy got COVID-19 in mid-March 2020.  She was hospitalized for 30 days, home for 8 days and back in the hospital for 12 more days with pneumonia and blood clots. She has been on oxygen at home since May of 2020. “I was hoping to get off the oxygen, but unfortunately my lungs were too damaged,” Joy said. “I used to regret it but now it's my new normal. They help me to breathe and I have little more independence when I came home. I’m grateful, I’m truly, truly grateful.”
Joy Ezekiel-Gibson, 47, poses at her home in Atco, NJ. Joy got COVID-19 in mid-March 2020. She was hospitalized for 30 days, home for 8 days and back in the hospital for 12 more days with pneumonia and blood clots. She has been on oxygen at home since May of 2020. “I was hoping to get off the oxygen, but unfortunately my lungs were too damaged,” Joy said. “I used to regret it but now it's my new normal. They help me to breathe and I have little more independence when I came home. I’m grateful, I’m truly, truly grateful.”Read moreTYGER WILLIAMS / STAFF PHOTOGRAPHER

Joy Ezekiel-Gibson and Michael Clark both caught COVID-19 last March during the horrible first wave, when tests were hard to get, when only medical workers wore masks — if they could find them — and when doctors were figuring out on the fly how to treat a brand-new, deadly disease.

Ezekiel-Gibson, 47, of Atco, Camden County, survived 17 days on a ventilator, then needed a second hospitalization for pneumonia and blood clots. Clark, a 32-year-old runner from Philadelphia, fought the virus at home despite serious symptoms. He was afraid to go to the emergency department.

A year later, the two have one thing in common. They are not back to normal.

Ezekiel-Gibson needs extra oxygen for the slightest exertion and battles severe fatigue. She has not been able to work and is contemplating applying for disability. Clark is back to long days of work at his home office, but he walks instead of runs now and deals with intermittent symptoms: fatigue, headaches, chills, chest tightness, and throat constriction he calls the COVID-19 strangle. “I have not had a single day in which I have felt pre-COVID normal or well,” he said.

As the growing pipeline of vaccine doses provides hope of a more normal life for many Americans, some long-haul survivors from that first wave are stuck in limbo — grateful to be alive but unsure of what the coronavirus has done to their futures.

The virus made the jump from animals to humans barely a year ago, so no one yet knows if people who are still sick after a year can keep getting better. Though they don’t have much in the way of therapies to offer, doctors are hopeful because they are seeing slow improvement continue in many long haulers.

“The hope is that they will all get better. That’s the hope, and that is what we will work hard to achieve,” said Rene Alvarez, who heads the cardiology division for Jefferson Health. “The body’s incredibly amazing.”

» READ MORE: Could the COVID-19 vaccines make long-haulers feel better?

Doctors also said, though, that some patients, such as those with lung scarring or who suffered strokes or clot damage in other parts of their bodies, may have lasting damage. Benjamin Abramoff, a physical medicine and rehabilitation physician who heads Penn Medicine’s post-COVID recovery clinic, said COVID-related nerve damage can “take a long time to resolve” and is sometimes permanent. Alvarez said patients who had serious health problems before they got sick are now much more disabled.

Many need long-term treatment

Hospitals increasingly are creating multidisciplinary post-COVID-19 treatment programs for survivors with what many call long COVID. (The normally straightforward Anthony Fauci wants us to use a more scientifically precise but far less memorable label: post-acute sequelae of SARS-CoV-2, or PASC.) Temple Health and Johns Hopkins Health System started such programs in April. Mount Sinai Health System had one by May. Penn’s started in June and Deborah Heart & Lung Center’s this January. Virtua plans to open one soon.

“Once these clinics are established, they’re just very quickly overwhelmed with the number of people who are seeking care,” said Emily Brigham, a pulmonologist who codirects the Johns Hopkins program. It has seen almost 400 patients.

“Everybody needs to pitch in and help take care of these folks. … This is going to be with us for a long time.”

Concern about lasting symptoms is high enough that the National Institutes of Health last month announced that it would spend $1.15 billion over four years to study long COVID-19.

Early on, doctors anticipated that large numbers of COVID-19 patients who survived intensive-care stays would need follow-up therapies, especially those who needed ventilators or ECMO machines for both heart and lung support. They had already identified a post-intensive care syndrome in people who had required such care for other infections. These patients had often struggled for months with weakness and emotional problems. Many were unable to return to work.

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» READ MORE: When a ventilator wasn't enough, this coronavirus patient went on ECMO

More surprising was the influx of patients like Clark, who were not sick enough to need hospital care but also had lasting and sometimes debilitating symptoms. “That’s where a lot of the mystery lies,” Abramoff said.

Such persistent symptoms are not unheard of among people infected with other viruses, including other coronaviruses like MERS and SARS, but doctors have never seen so many patients like this. As several pointed out, that could be because vast numbers of people were encountering the new virus for the first time. If only a small percentage of the 28 million Americans infected so far develops persistent symptoms, that’s still a lot of people.

Doctors don’t know for sure how many people get long COVID. One study based on a survey of people who tested positive for COVID-19 in the United Kingdom found that 20% had symptoms lasting five weeks or longer and 10% had them more than 12 weeks.

One recent analysis from China found that 76% of hospitalized patients had at least one symptom six months after they first got sick, most commonly fatigue, sleep problems, anxiety, or depression. Many had impaired lung function. A University of Washington study from last month also looked at people who were six months out, but most had not been hospitalized. Thirty percent had one or more persistent symptoms including fatigue, loss of sense of smell or taste, headache, and trouble breathing.

There are no data yet on people who have symptoms for a year, but area doctors said some of their current patients have been sick since the first wave. “It’s not a small number of patients,” said Soo Kim, a physical medicine and rehabilitation specialist who codirects the Johns Hopkins team. “We do have a significant number of patients we’re still seeing from April or May. Personally, I don’t know how long it’s going to take.”

Eric Sztejman, a Virtua pulmonologist, said most patients are well after six to eight weeks. “Anybody after that is a long hauler,” he said.

Doctors have found no way to predict which COVID-19 patients will recover quickly and which will not. The ranks of long haulers include people with risk factors for serious COVID-19 like old age, obesity, and diabetes as well as young, healthy athletes. Those who were initially the sickest face the longest recovery and greatest risk of organ damage, doctors said. It’s possible that some people sickened and hospitalized in later waves of the pandemic could fare better because different treatments lessened time on ventilators. Some outpatients have also been able to receive monoclonal antibodies to combat their infections.

Often, long haulers complain of “brain fog” or problems with concentration and word-finding so severe that “even watching TV becomes a chore,” Sztejman said. There are also numbness from nerve damage, muscle weakness, heart-rhythm problems, and fast heart rate after exertion. Kim said she has seen patients with autonomic nervous system dysfunction that causes dizziness and fast heartbeat.

» READ MORE: Doctors, personal trainers share the safe way to return to exercise after COVID-19

Tests can’t always explain what patients are feeling. “Most of these people had a completely normal workup,” said Jessica Most, a pulmonary and critical care doctor at Jefferson. One possible culprit is damage from systemic inflammation. Another is direct damage from the virus or small blood clots. Researchers are also looking at whether the disease triggers immune-system problems. Proning, or placing patients on their stomachs so that they breathe better, may cause some nerve damage.

For now, treatment often revolves around helping patients to get stronger. Most said she is trying to figure out how to retrain the nerves involved in brain and lung interaction. She is teaching patients how to breathe more slowly.

Doctors said patients often feel much better after a year than they did at six months. The coughing goes away and sense of smell usually returns. Fatigue gets better, as can some heart problems. Many patients slowly regain strength. That’s why doctors think it’s too early to give up on their extra-long haulers.

Gerard Criner, director of the Temple Lung Center, thinks the “vast majority” of patients will, eventually recover.

Too weak to brush his teeth

Michael George, 53, of Woolwich Township, Gloucester County, and Antonio Ellis, 44, of Toms River, Ocean County, had similar, harrowing tales of COVID-19 that began last March. Both needed to be on a ventilator and then received ECMO at Cooper University Hospital.

“I could actually hear my lungs crackling when I breathed,” George said. “… It felt like your lungs were made of glass, thin sheets of glass.” He was at Cooper and then at specialty rehab hospitals for a total of 74 days. “The first time I had to lift a weight, it was a one-pound weight, and I pulled a muscle,” he said.

Ellis, a Manchester Township police sergeant, spent 45 days in the intensive-care unit and was in a medically induced coma for 30 days. He was too weak to brush his teeth when he left the hospital.

Both faced laborious recoveries but are almost back to normal, except for neuropathy in their hands and feet. “Where I used to be able to run five miles, I can’t do five miles,” said Ellis, whose lungs are scarred but functioning normally. “I can do two, and it’s not pretty.”

George, who works in IT, had to learn to type again. He has spent months exercising his fingers but still doesn’t have feeling in all of them.

George’s wife, Janice, 58, was sick for about three weeks, but she stayed home with their then-16-year-old son, who had the virus, too. She did reasonably well during the summer, but in the fall began having vertigo, headaches, and daily dizziness. Her doctor can find no explanation for it other than COVID-19. “It’s sort of like fibromyalgia,” she said. “They can’t quite figure out where it’s coming from, so they don’t know how to treat it.”

Clark, who could run a mile in less than six minutes before he got sick, has had a roller-coaster recovery filled with frustrating relapses. Because he never had a fever, he couldn’t get a coronavirus test during his initial illness, but doctors have diagnosed him with COVID-19. He participated in a post-COVID-19 rehab program at Penn in the fall. He had another relapse after that, though, and is only able to walk 20 to 30 minutes each night. He moved and started a new job near Washington two months ago. That, he said, may take all the energy he has.

Ezekiel-Gibson remembers not being able to move at all when she was in Virtua Marlton Hospital. Her arms and legs hurt. She felt better after her second hospitalization. It was an achievement to make it upstairs and take a “heavenly” shower.

Now, she can breathe normally while sitting still but needs supplemental oxygen if she does anything else. “The minute I walk around, my pulse ox drops,” she said. Her lungs are scarred. A recent breathing test was only 7% better than the one she took in July. She was disappointed that she has to stay on oxygen; it’s not fun to “walk around with a tank,” but she has felt better since she accepted her new normal.

She grieves the loss of a good friend, who got sick at the same time she did after they attended the same funeral. Like other patients, she sometimes feels a jolt of anxiety when something, like a recent trip to the hospital, reminds her of how sick she was. She is hopeful, but realistic.

“First and foremost, I’m grateful to be alive, so I try to lead with gratitude,” she said, “because there are over 500,000 people who aren’t here to tell their story.”

Brigham, the Johns Hopkins pulmonologist, said she knows how frustrating it is for long-haul patients to be medical pioneers. “It’s a tough conversation,” she said. “Patients need to know these answers to plan their lives, but, more often than not, we don’t know them.”