LI COVID-19 Long-Hauler In ‘Basic Training’ For Breathing

MALVERNE, NY — One of the last things COVID-19 survivor Brian Jaffe vaguely remembers before he was intubated at St. Francis Hospital in Roslyn in April 2020 is taking a selfie for his wife so that she could see how he was doing.

He had just “graduated” from a nasal air tube to a BiPAP (pressurized air) machine to aid his breathing because his symptoms worsened, but after that, he lost consciousness when his oxygen level plummeted.

The next memory Jaffe has is when he was removed from a ventilator after spending 39 days in a medically induced coma.

“It was scary,” said the 54-year-old Jaffe, in a phone interview from his Malverne home, his voice slow but steady. He sometimes pauses to quickly draw more air into his lungs after talking. “It felt like I couldn’t breathe because there was a plastic bag over my nose and mouth.”

Since coming out of his coma last May, Jaffe, a former health care worker at a hospital in Brooklyn, has been down a hard road in his recovery as a COVID-19 "long-hauler." He has had two throat surgeries to correct damage to his vocal cords from his long intubation. And while he is up and about — walking and living his life — he is still hooked up to a portable oxygen tank that he carries wherever he goes, and he needs a walker.

As for breathing, Jaffe is still not able to take breaths as he did before his lungs were ravaged by the virus.

“It’s kind of like trying to breathe through a straw,” he said. “Imagine trying to take the deepest breath you can, if it is through one of those narrow coffee straws.”

For Jaffe, simple exercises such as breathing in for four seconds, then holding it for six seconds, followed by letting it out for nine seconds, can be difficult because he is still suffering from the lingering effects of the coronavirus, like other long-haulers.

But he is one of many long-haulers who are building their strength by practicing breathing exercises in a pulmonary support group, known as a Better Breathing Club, which is run by Paragon Management at Excel at Woodbury for Rehabilitation and Nursing.

It’s like “basic training” but for COVID-19 patients, in the respect that the group presents physical and psychological challenges for its members, he said.

Jaffe said that he has noticed positive results in his breathing since joining. An added perk is that its members are also there to provide emotional support, and he has found “validity” in knowing that other long-haulers are suffering as he is.

“There is so much positivity, and sharing going on,” he said of the group — which, until last year, was primarily dedicated to the sufferers of chronic pulmonary issues such as COPD (chronic obstructive pulmonary disease).

Paragon Management’s Better Breathing clubs, which are run virtually from locations throughout Long Island — from Center Moriches to Glen Cove — have experienced an uptick in membership from up to three members to anywhere between 10 and 17 members attending each class since COVID-19 hit last year, according to Kandrap Shah, senior coordinator for pulmonary rehabilitation at the medical group.

The clubs have become so popular that patients who have seen success are referring friends and family members from out of state, and the program now has members from as far away as Florida and California, Shah said.

Shah said the group’s focus varies to include breathing exercises. But sometimes he will switch things up for patients who might not have spirometers — which help patients gauge and expand their lung capacity — by adding strength and conditioning exercises such as stretching, Pilates and yoga, all while educating patients that the exercises help build a healthy core that strengthens their breathing.

He also has added fun items like a harmonica, which patients love.

“One of the things that really captures the members is the harmonica sessions, because they weren’t aware of it before,” said Shah, a physical therapist assistant and certified strength and conditioning specialist.

“Using a harmonica for five to eight minutes a day improves your lung functioning significantly because, as you play harmonica, it is a forced inhalation and a forced exhalation,” he said, adding that the rhythm of breathing in and breathing out "presents a nice set of contractions for the inner respiratory muscles.”

“And that has helped my patients significantly,” he said.

Staff members also give exercises the group members can do at home, and staffers follow up with them to see how they are doing, he said.

In their struggle to recover from the debilitating coronavirus, Jaffe and his fellow long-haulers fall into a category of about 10 percent of the population who have had COVID-19 and are experiencing prolonged symptoms anywhere from one to three months after being infected, according to a “practice pointer” by British scientists that was referenced recently in The Journal of American Medicine.

A recent study of COVID-19 suffers in China found that roughly 70 percent of study participants continued to have abnormal lung scans — which indicates that someone’s lungs are “damaged and trying to heal” — up to three months after leaving the hospital, according to the National Institutes of Health Director’s blog.

Northwell Health Syosset Hospital Chief of Pulmonary Diseases Dr. Ian Newmark, who screens Excel patients entering its pulmonary rehabilitation program, has seen hundreds of patients with COVID-19 since the pandemic began. He said he continues to see dozens of people who are long-haulers, or who are “long COVID,” and have had persistent symptoms such as shortness of breath, chest pain, “brain fog” and rashes, he said.

“My office is filled with patients like that at this point,” said Newmark, who formerly served as Syosset Hospital’s chief of critical care.

Newmark said the medical community is seeing patients in all age groups, and many of them were healthy before they contracted COVID-19 — and when they did, their symptoms were not as serious at first.

“You would think that it would be the sickest ones who were in [the intensive care unit], but that is not necessarily so,” he said. “We are seeing a whole spectrum of age. We are seeing a whole spectrum of COVID disease and a wide spectrum of how long their symptoms last.”

By definition, “long COVID” patients are those who have symptoms beyond 12 weeks, but Newmark said he and his colleagues are seeing patients with symptoms such as continued breathlessness up to year later.

“We don’t have any specific treatment for it,” he said. “We do make recommendations, most of which is the breathing exercises, or other exercises to build them up.”

He said it is important for anyone who had the virus to get checked out because they could develop other serious complications such as cardiac issues, which is common.

Many long-haulers have continued "deconditioning" problems and are struggling with day-to-day living, but they can be helped in a Better Breathing Club, he said.

“The goal of the Better Breathing Clubs is not just to improve lung capacity, but to minimize symptoms, and to help them improve their general fitness and kind of get [them] back to the way they were — increase their exercise tolerance,” he said.

Looking back over the last year, Jaffe can hardly believe how long his journey to recovery has been.

His wife, Carolann, would speak with hospital staff at least twice daily; sometimes she received good news, and other times she did not. He recalled learning that his heart stopped three times during his coma and CPR was preformed to bring him back from the brink of death. Around that time, Carolann and his two sons, Alex, 23, and Paul, 21, were informed that they needed to start making funeral arrangements for him.

“It was crazy,” he said. “I fought through most of it, but my family was tortured on a daily basis.”

At this time last year, Jaffe never would have believed what lay in store for him because he thought that he would never have been as sick as he was at his age.

“I’m in total mental shock,” he said.

But, while his breathing groups have helped him, he is still not at his pre-pandemic level of health — and it seems to him that his future is uncertain.

“That is one of the frustrating things — nobody knows,” he said. “It would be nice for the answer to be that on Tuesday, Oct. 14, I am going to be better, and that is one of the mental issues with this.”

Unlike other illnesses, the medical community cannot answer the questions about what’s ahead for long-haulers because it is still learning as it goes along, Jaffe said.

“The science isn’t there yet,” he added.

Despite his feeling of uncertainty, Jaffe has vowed to continue attending his Better Breathing Club because it has helped him.

“It’s allowing me to cope with it,” he said. “That all has some positive value to it, but nothing has made a permanent fix at this point.”

Still, he urged other long-haulers to join a group as well, if they have not already. To anyone who has but is not satisfied, he urged them to try another if the dynamics are not working out for them.

“Try joining a support group, because it helps to be able to connect with other people,” he said.

More Information About Excel’s Better Breathing Groups:

Excel at Woodbury’s group meets the second Thursday of the month at 2 p.m. Other nursing facility groups organized by Excel’s parent company, Paragon Management, include the Lynbrook Restorative Therapy and Nursing’s group, which meets the last Monday of the month at 9 a.m., and Oasis in Center Moriches, which meets the last Thursday of the month at 6 p.m. The management company’s nursing facilities in Glen Cove, as well as Surge in Middle Island, meet the third Thursday of the month at 2 p.m.

Joining Paragon Management’s Better Breathing Group is free. People can receive a Zoom invite to participate in any of the virtual support groups by emailing lisa.penziner@paragonmanagementsnf.com or calling 516-457-5585.