‘COPD is not a death sentence’

No more perfume. No more scented candles. Judi Casey’s damaged lungs can no longer tolerate inhaling air with strong odors. She even has to stay downwind from fried food when it’s being cooked.

Casey lives in La Salle and she’s basically confined to her small apartment thanks to chronic obstructive pulmonary disease, better known simply by the initials COPD.

Casey had smoked off and on for the better part of 45 years — menthols were her favorite — and smoking cessation techniques simply didn’t work for her. It wasn’t until 2012 that she went cold turkey and gave up smoking for good; but it was too late.

“It wasn’t too long after I quit smoking they sent me to take a pulmonary function test,” Casey recalled. “When I went back to the doctor they told me I had COPD and emphysema.”

The disease progressed over the past seven years and today she uses a device that pumps concentrated oxygen into her lungs through a breathing tube into her nostrils. Relegated to home, she spends much of her day online warning those who smoke to quit now and to those who have COPD to not give up hope.

“There’s no cure for COPD — it’s only gets worse — but you can go on for a long time,” Casey said, “and I’ve been able to reach out to people and say, ‘COPD is not a death sentence.’”

What is COPD?

COPD is actually a group of diseases such as emphysema that impede air flow through the lungs. Whatever the causes — and genetics appear to be a factor, too — it’s a condition that doctors can sometimes arrest, but seldom reverse, and left untreated it will kill.

“It’s the fourth leading cause of death in the United States and it’s hard not to find families where at least some relatives don’t suffer from it,” said Dr. Jeremiah Crabb, one Casey’s phsyicians. “It’s a very common disease.”

And there’s one more message Casey feels isn’t getting the publicity it deserves: COPD affects non-smokers, too. Across the globe, roughly one in three people with COPD can be classified as a non-smoker, though Crabb said the term “non-smoker” deserves a bit of elaboration.

Crabb, a clinical professor who practices with the Illinois Lung Institute, keeping office hours at area hospitals, estimates that 1 in 5 of his patients is a non-smoker. That is to say 1 in 5 is a former smoker or someone with a limited habit, such as smoking only at parties. Second-hand smoke, too, appears to be a significant risk factor.

NON-SMOKERS AT RISK, TOO

Rick Fusinatto of Spring Valley is one of those in the unlucky 20th percentile. Fifteen years ago he was experiencing shortness of breath and took a lung test that flagged him as a candidate.

“The nurse said to me, ‘I think you might have COPD,’ and I just looked at her,” Fusinatto recalled, baffled at how he contracted lung disease. Fusinatto told the doctor truthfully he’d never lit up and the doctor concluded, “You must have been around a lot of smoke.”

He had. Fusinatto had shot pool, played euchre and socialized at taverns where somebody — sometimes seemingly everyone — was enjoying a few drags.

“Everybody around me smoked,” he said. “You might as well say I smoked.”

How can you protect you and your loved ones from COPD? If you smoke now, stop. Smoking is by far the greatest risk factor and prevention is by far the best treatment option. That goes for vaping and smoking marijuana (not edible cannabis, of course), which will be legalized soon in Illinois.

Crabb allowed that there seems to be a link between vaping, pot and COPD but he noted studies still are emerging and the data is not conclusive.

“It has not been well studied because up until recently recreational marijuana of course was illegal, so it’s hard to get accurate studies in terms of use,” he explained. “It seems the use of inhaled marijuana is a risk factor for COPD also. How it stacks up against classic, tobacco-based products is not well-understood.”

Another risk factor to be aware of is family history. Studies have pinpointed an enzyme that seems to impede COPD and anyone with a family history of lung disease is encouraged to get a checkup that includes a lung function test.

Crabb pointed out, however, that anyone feeling short of breath need not jump to conclusions and think they have COPD, as lung capacity diminishes naturally with age.

“What would be normal for a 20-year-old would not necessarily be normal for a 70-year-old or an 80-year-old," he said. "By the nature of how we age, our lungs are best somewhere between age 20 and age 30. After that, even if you’ve never smoked and have no risk factors, you have a decline in lung function simply by getting older.”

This is not to say COPD is strictly an older person’s disease, though Medicare does cover many treatments. Crabb said he has diagnosed COPD in patients still in their 30s.

treatment options

Early detection is key because life expectancy is greatest when COPD is arrested and treated at early stages. Medscape.com reports the five-year mortality rate for people with COPD typically ranges from 40% to 70%, depending on disease severity, while the two-year mortality rate for people with severe COPD is about 50%. Annually, COPD kills 3 million people worldwide.

“Survival rates for people with severe COPD are, in fact, worse than those for people with many common cancers,” the website states.

Is COPD reversible? The short answer is no. While some forms can be partially reversed — bronchial passages can be reopened with an array of treatment options including drugs, therapy and surgery — most treatments are geared toward arresting the disease and keeping it from getting worse.

Treatment options include pharmaceutical treatments that open up the bronchial passages such as Advair. Then there’s pulmonary rehabilitation, a regimen of supervised exercise, counseling and nutrition guidance that collectively improve breathing.

At the most advanced stages, there are surgical options such as removing damaged lung tissue and, for the very worst cases, the possibility of a lung transplant.

But Crabb said treatment options are, in most cases, limited and a better strategy is to avoid the risk factors that lead to getting COPD in the first place.

“Reversible is a relative term,” he said. “There may be minor reverses, but generally your lungs do not rebound to where you were if you never smoked.”

Early detection helped Fusinatto, now 69 and coming off an A-plus checkup. Doctors put him on an inhaler and told him to exercise and stay active, which the retiree does by deer hunting, golfing and hunting mushrooms. Several men in his family died pushing 90 and the doctors see no reason why he can’t share their longevity.

“I was lucky,” he said.

Casey wasn’t as fortunate, and has been surprised to learn how prevalent the disease is. Two years ago she joined an online support group, “Let’s talk COPD,” and watched wide-eyed as membership zoomed past 6,000 and counting.

She takes solace in knowing she doesn’t share her burden alone, and is glad to lend an encouraging word to others in need of a pick-me-up.

“Once I joined this group I felt like I was home. And I’m able to help a lot of other people out. My philosophy is, I’ll do my best to make somebody laugh or feel good because then it’ll make me feel good.”

Tom Collins can be reached at (815) 220-6930 or TCollins@shawmedia.com. Follow him on Twitter @NT_Court.