Robert Busse thought he was having a heart attack.
After rushing to a hospital, he learned his left lung had exploded.
"My left lung looked like hamburger, that’s how bad it was. ... They (the doctors) had to wrap it up like a package," Busse said. "The doctor told my kids, 'Get him in the hospital because that lung’s not going to last.'"
At 57, Busse was diagnosed with chronic obstructive pulmonary disease. After nearly five decades of smoking and working in steel mills, the Highland man relied on an oxygen tank for nearly another decade. His lungs gradually worsened. Surgery became the only option.
One year after his heart attack scare, Busse underwent a double lung transplant in Chicago. At 70, he can now go about his day without the aid of an oxygen tank, though COPD is something he will have to live with — and manage — for the rest of his life.
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The chronic disease plagues many Region residents. Noncancerous lung ailments are the third leading cause of death in Northwest Indiana, claiming 8,363 lives in Lake, Porter and LaPorte counties from 1999 to 2020, a Times analysis of Centers for Disease Control and Prevention data shows. COPD, a disease that forces victims to gasp for air, is the top single cause of death within that category.
“It felt like my somebody was squeezing my lungs," Busse recalled.
Nationally, chronic lower respiratory diseases were collectively the fourth leading cause of death between 1999 and 2020. Noncancerous lung ailments killed 45.4 out of every 100,000 people in the U.S. during that 22-year period. Northwest Indiana surpassed the national rate, with 50 out of every 100,000 Region residents dying from noncancerous lung disease during the same time period.
Indiana's high smoking rate likely accounts for many of the deaths, as about 75% of people with stage II, III or IV COPD are current or former smokers. However, once someone is diagnosed with the disease, there are several medical interventions, lifestyle choices and environmental factors that can add years to their life.
Smoking shaves years off Hoosiers’ lives
Busse picked up a smoking habit at 13. His addiction continued for over 40 years. He finally quit one year before he was diagnosed with COPD.
“I had a real bad flu, and I had two cigarettes left. I told my daughter to go to the store and get me more and she said no. I was too sick to get up and get a pack of cigarettes," Busse said. "After I got better, I said, ‘Hell, I didn’t smoke for three days,’ and I quit."
However, Busse knew the damage had already been done. He had breathing problems for years, often struggling to keep up with his steel mill coworkers.
Lungs typically lose oxygen capacity with aging. Early cigarette use quickens the process, explained Brian Urbaszewski, director of environmental health programs for the Respiratory Health Association.
"If you start chipping away at that (lung capacity) in your 20s, 30s and 40s, that means by the time you are in your 70s, you have a lot less capacity than you would have had," Urbaszewski said. "Smoking and secondhand smoke stunts kids' lungs and sets them up for long-term failure."
Cigarette use is highest in the Midwest, where about 15 out of every 100 adults smoke. In Indiana the rate is even higher with 21 out of every 100 adults.
Though Busse was able to stop cold turkey, the majority of smokers have a much harder time quitting.
"It is an addiction, so it is not something people can usually just walk away from," Urbaszewski said, adding that most people try to quit several times before they are successful.
Sarah Volk, who works in pulmonary rehabilitation at Community Hospital, said she believes too much of the smoking cessation messaging "shames" individuals struggling with the addiction. Instead, she said, showing people what COPD does to lungs — and showing them where they're headed — is a more effective way of getting smokers to quit.
“Even though they know it's going to kill them, and they want to live, and they may even be on oxygen, they can’t stop," Urbaszewski said. “It just shows how powerful of an addictive chemical tobacco is."
However, because generations of current and former smokers already exist in Indiana, our state will continue to treat people with COPD for "many, many years," Urbaszewski said.
"We don’t want those people ending up in ERs," he said.
A bad combination
When Busse received his COPD diagnosis, doctors told him it was largely the result of smoking, though working with asbestos in steel mills didn't help.
"My last 20 years at the mill I worked with asbestos. Basically, it will kill you if you don’t wear a mask, but we always wore masks,” Busse explained.
Heavy industry and air pollutants from trucks can worsen COPD symptoms. During the hot summer months, air pollutants interact with the sun, producing ground-level ozone which contributes to smog. Ozone "burns the things it comes in contact with, including the insides of your lungs," Urbaszewski explained.
People suffering from COPD are the canaries in the proverbial coal mine, first feeling its effects, then visiting emergency rooms and too often dying, Urbaszewski said.
Cigarette usage is also more common among people with lower incomes. Research has pinpointed a number of reasons for the disparity, including the way tobacco companies target low-income communities through marketing, smoking as a way to cope with added financial stressors and less access to resources that help individuals quit.
“Smoking disproportionally impacts vulnerable people," Urbaszewski said, noting that heavy industry is often located in low-income communities. "You have poorer, more vulnerable, sicker people living closer to the sources of air pollution. That is a bad combination."
According to the U.S. Environmental Protection Agency's Toxic Release Inventory, Indiana ranked third out of 56 states and territories nationwide in 2020 for the amount of toxic chemicals released per square mile. That same year, the Hoosier state released 22.7 million pounds of toxic chemicals into the air, compared to Illinois, which released 19.5 million.
Strict air emission limits, transitioning to renewable energy sources and replacing older diesel trucks with electric options are all solutions that could help people with COPD have less "bad days," Urbaszewski said. However, the best way to preserve remaining lung health after a COPD diagnosis is medical treatment.
Countless people die waiting for care
When Busse was initially diagnosed, he thought he was going to die. Thirteen years later, he exercises regularly, takes his medication, and "just enjoys life."
"I still have my days where I cough and things like that, but I feel good and that’s all I care about," he said.
Volk said pulmonary rehab like the kind she does with Busse can add years to a patient's life. The problem is the vast majority of COPD patients aren't diagnosed until they are already at 50% lung capacity, which is stage II COPD. Volk urges individuals to get a checkup as soon as they start feeling short of breath.
Though the treadmill exercises and stretches performed in pulmonary rehab mirror the therapies prescribed after heart attacks, Volk said there is one major difference — patients have to do them for the rest of their life.
"When you need people to stay in a lung rehab program permanently and insurance only pays for a couple visits and then you’re cut off, that’s not helpful," Urbaszewski said. "People are going to slip away."
Right now, there aren't enough pulmonary rehab programs in this Region, Volk said. She has more than 100 patients on her waiting list, with countless people dying before they even begin rehab regimens.
“I don’t think people really know how many people die waiting," she said.