Nearly 11 years ago, Dallas, Texas retiree Bill Vick was training for a triathlon and noticed that his swimming performance had started to decline. At the time, he was 72 and seemingly in peak health.
“I went to the doctor, not because I felt bad, but because I was worried about my times and distances, and didn’t want to lose,” he said. Soon after, Vick received his diagnosis: idiopathic pulmonary fibrosis (IPF).
“Back then, I was working out 3 times a day — swimming every day, or running, or lifting weights,” he said. “Now, if I can run a block, I’m a hero.”
Vick, 83, is considered a hero in the PF community. Three years after being diagnosed with this irreversible, unpredictable, and fatal disease, he was still winning 5K races. Vick has now lived more than a decade without a lung transplant — a rare feat considering the median life expectancy for IPF patients is 2 to 4 years after diagnosis.
PF Warriors, the nonprofit group Vick heads, bills itself as the world’s largest support group for pulmonary fibrosis patients, with 2300 members in 19 countries. The all-volunteer organization, which has its own Facebook page, is supported by several leading pharma companies including Genentech and Boehringer Ingelheim.
Vick said the average “PF warrior” is 63 years old, down from an average of 68 in years past.
“Our patients are older and well educated. They have to be if they want to survive and live with this disease,” he said. “And they interact with their doctors as peers, not simply as patients. With many other diseases, the patient is at the will of the doctor.”
Recently, Vick invited cardiovascular and pulmonary clinical specialist Noah Greenspan, DPT, CCS, EMT-B, to speak to his group via Zoom about COVID-19 and its potential impact on the 170,000 or so Americans with PF. (That number doesn’t include the tens of thousands of patients with sarcoidosis or scleroderma, who often have PF as a secondary disease).
PF Community Relatively Lucky Throughout Pandemic
Dr. Greenspan, who heads the New York-based Pulmonary Wellness Foundation, began treating pulmonary fibrosis in 1995, at the age of 24.
“At that time, IPF patients were not even remotely considered for rehabilitation. They were told, ‘you’re too sick for rehab.’ That basically meant they should go home and wait to die.”
“When COVID started, obviously we thought it was a respiratory disease like the flu, lasting 10 to 14 days. We now know that nothing could be further from the truth,” said Dr. Greenspan, who in March 2020 closed the Manhattan rehab clinic he had opened in 1998 out of concern for the safety of his patients — not knowing it would be a permanent shutdown.
In fact, relatively few PF patients developed coronavirus because they took no chances, he said.
“Our community has not lost a lot of people to COVID,” Dr. Greenspan said, adding that he and his team have basically been training for such a scenario for decades. “When our community heard about heart and lung disease, we did the smart thing and stayed home. In many ways, we were more prepared than people who had never had any type of medical emergency before.”
He added: “Telehealth in my opinion is a great thing. I don’t think it should replace in-person medicine for the reason this is a flat screen. And sometimes, when you’re with a patient, you see something, and we still need that. But there are downsides to sitting in a waiting room if you don’t need to.”
Dr. Greenspan said he’s treated 277 COVID “long-haulers” — patients who suffer brain fog, physical pain, fatigue and other debilitating symptoms of the coronavirus long after they’ve recovered from the immediate infection — and knows 31 people who died of the disease.
“If you knew COVID at all, you’d know that you don’t want it under any circumstances,” he said. “When people talk about this being a hoax, it’s really mind-boggling.”
According to a recent survey of 200 interstitial lung disease (ILD) patients, 92% said they were vaccinated, and only 3 people said they had no plans to get inoculated.
‘We Want to Stay Alive at all Costs’
The pandemic has made it much harder for Dr. Greenspan’s patients to focus on proper exercise, nutrition, and stress management. On the other hand, he said, coronavirus has spurred research into respiratory diseases, benefitting PF patients, as well as those with ILD in general. “Our community is going to get some bang for their buck out of this.”
He said that since getting vaccinated himself, he’s changed “absolutely nothing” about his day-to-day behavior.
“I still double-mask if I fly, which is almost never. I’ve only flown twice during the entire pandemic. I also don’t believe yet that it’s impossible to get COVID from surfaces. So many things are unknown,” he said. “We want to stay alive at all costs. I don’t care if I stay home for the rest of my life, as long as I don’t get COVID.” He added: “Think of it like sexual health. You can look healthy, but that doesn’t mean you don’t have an invisible sexually transmitted disease. If I assume that everybody is potentially infected, then I’m always protected.”
For now, Dr. Greenspan said he’ll continue to err on the side of caution, even though numerous states have lifted restrictions on mask-wearing and social distancing as more Americans get vaccinated.
“Would I go out to a crowded restaurant?” he asked. “No. A vaccine is like a bulletproof vest, it’s not 100% guaranteed. I don’t trust anyone that I don’t know personally and haven’t seen vaccinated. I’ve always been a germaphobe,” he said. “If I can smell you or feel your breath on me, that’s too close.”
Meanwhile, Vick — who still lifts weights and walks on a treadmill every day — is also being extremely careful about COVID-19, even though he’s fully vaccinated.
“A patient in Florida once told me, ‘until you find the expiration date that God has tattooed on your bottom, you live every day the best you can — because he’s the only one who knows.’ That’s my philosophy,” Vick said. “I don’t worry about how long I’ve got. I worry about today.”