On a recent midweek afternoon, ‘60s music pumped through speakers in a large room as a handful of people strode purposefully on exercise equipment, working their arms and legs. The scene might have been a run-of-the-mill fitness gym but for the lengths of green tubing that snaked between a few metal chairs in the middle of the room.
For the men and women working out, the otherwise unremarkable pieces of plastic tubing were lifelines to oxygen they needed to sustain them, not only for exercise but for routine activities. These weekday warriors were patients with lung disease managing their conditions at the Pulmonary Rehabilitation gym, located in the Heart & Vascular Center at UCHealth University of Colorado Hospital.
The patients stepped up on elliptical equipment and pushed themselves physically – not in spite of their lung disease but because of it. Instead of resting their damaged lungs, they challenged them, aiming to strengthen what remained of their depleted resources.
The machines in the gym are more than the ordinary treadmill. They allow for patients to move while increasing the resistance they face, as one would by walking steadily up an incline. That’s by design, said Hector Grajeda, RT, one of the respiratory therapists who works with pulmonary rehab patients at UCH.
“We want patients to increase their effort and intensity levels,” Grajeda said. “They utilize more energy and calories and increase their heart rate and respiration.”
Clearing the air
The extra effort for patients who stick with pulmonary rehab can be significant. It can’t reverse lung damage, but it can increase endurance, decrease pressure on the heart, alleviate shortness of breath and improve quality of life. And there is the added benefit of getting out and about and hanging out with others with whom you have something in common – a big plus for people battling conditions that limit activity and breed loneliness and isolation.
The number of patient visits handled by the Pulmonary Rehab program at UCH has grown by about 50 percent since 2014, noted its supervisor, Alexandra Worl, RT. That’s in large part the result of the team’s commitment to patient care, said Joyce Lee, MD, an assistant professor of Pulmonary Sciences and Critical Care Medicine with the University of Colorado School of Medicine. Lee said she routinely prescribes the therapy for her lung disease patients.
“Our program has invested respiratory therapists who do a great job of engaging patients,” Lee said. That attention, she stressed, is vital in monitoring and modifying patients’ exercise and helping them to understand the limitations imposed by their lung disease.
Ultimately, though, the value of the program is measured by the effects it has on patients losing a precious commodity: the breath of life.
Walk of life
On that same midweek afternoon, Erin M., 54, wheeled a pair of oxygen tanks into the gym, put a mask over her nose and stepped onto an elliptical machine. She began walking, watching numbers on the machine that displayed the distance she walked and at what speed as well as the calories she burned and her heart rate. Every 10 minutes, the resistance level she encountered ticked up a notch, increasing the intensity of her effort and pushing her lungs to work harder.
“It’s basically like going up the side of a mountain,” Erin M. said.
She kept up the work for about an hour, conversing all the while with a visitor. The same scene would have been impossible 14 months ago.
Erin M. has idiopathic interstitial lung disease: stiffening and scarring of the connective tissue around the lungs air sacs with no known cause. The process impedes the air sacs from expanding, making it more difficult to breathe.
Her breathing problems began in earnest in 2006 – more on that later – and steadily progressed. She had to leave her job with Frontier Airlines in 2011 and had deteriorated badly in September 2016 when she made her first visit to the Pulmonary Rehab gym after a referral from CU pulmonologist Rebecca Keith, MD.
“I had let myself get run down,” Erin M. said.
On their first encounter, Grajeda used a six-minute walk to assess Erin M.’s “submaximal level of functional capacity”: her oxygen consumption during exercise. He stopped the test early.
In everyday terms, “She needed more oxygen,” Grajeda said. He set her up with an oxygen system that would allow her to function and exert herself without becoming short of breath and hypoxic.
But Erin M. wasn’t content to simply increase her oxygen flow. She knew she couldn’t reverse the damage caused by her lung disease, but she committed to doing what she could to slow its progression.
“The program was important for me because I had to get busy living – or dying,” she said. “My lungs are crappy, but they are still mine. I’m making use of what God left me.”
Between that initial 2016 visit and early November of this year, Erin M. made 145 visits to the Pulmonary Rehab gym, Worl said. With a four-day-a-week commitment to the exercise, as well as physical therapy, Erin M. said she feels much better, and the numbers show why.
The distance she can cover in a six-minute walk test has nearly tripled since that first visit. The pressure on the right ventricle of her heart, which supplies blood to the lungs, has fallen by more than 40 percent. Her shortness of breath has decreased by half while the time she spends doing aerobic activity has increased threefold. She said she’s also lost about 15 pounds, another step that makes it easier to breathe.
Worl credits Erin M.’s hard work for a large part of the improvement, but the patient is quick to praise her providers for educating her about her disease and providing a supportive and encouraging environment to manage her overall health.
“Knowledge is power,” she said. “The education I have received here is thorough, and the people who help me are dedicated to a fault.”
Medical mystery
Given the mysterious nature of her interstitial lung disease, it’s not surprising that Erin M. appreciates having at least some measure of control over it. She said she’d been feeling bad for a couple of years before her lung problems made their dramatic appearance in 2006 while she worked a variety of jobs on the jetways, ramps and gates at Denver International Airport.
“I didn’t feel good, and a co-worker asked me, ‘Have you been eating blue candy?’” she recalled. She went to a physician at the airport, who found the frightening reason for her blue lips: Erin M.’s blood oxygen level hovered between 40 and 50 percent, about half the healthy level of 90. The physician quickly sent her to UCH over her protests that she needed to get back to work on the incoming flight from Albuquerque.
The diagnosis of interstitial lung disease explained the blue lips, but not the source of the damage. She worked at DIA through April 2011, wondering all the while if she might have been exposed to mold or bacteria from the “roadkill” of rabbits, rats and other animals she saw strewn about her work environment. She considered the risks of her frequent travel, including trips to Cuba and other places abroad, on planes she considers “flying petri dishes.” Casting her mind farther back, she thought of her father’s heavy smoking and COPD – she doesn’t smoke herself – and time in the ‘80s working on oil rigs.
But she later came to realize that her lung disease might well have taken root in the rubble of the most infamous attack on the United States since Pearl Harbor.
Digging through a disaster
Erin M. was living in Denver on Sept. 11, 2001, when planes hijacked by terrorists brought down the twin towers of the World Trade Center in New York, killing some 3,000 people and injuring hundreds of others. The horror struck home especially hard for Erin M., who grew up on Long Island. A few weeks later, she joined a group of volunteers who traveled east to bring “ancillary services” – boots, socks, food and other items – to the firefighters digging for remains through the massive pile of concrete, glass, metal and other debris left from the fallen skyscrapers. Convoys of trucks hauled load after load of material to junkyards as haze hung in the air.
She worked 10- to 12-hour days, six days a week, wearing a surgical mask to filter the omnipresent clouds of dust. In November, two months after the disaster, jet fuel from the attacking planes still smoldered in the wreckage. An alchemy of burning and chemical smells pervaded the subways she rode to and from the site.
By the time she left New York, Erin M. said, she had developed a cough that she chalked up to an allergic reaction to the contaminants at the site. She didn’t connect the experience to her later lung disease diagnosis, but in 2010 she was contacted by the World Trade Center Health Program, which the U.S. Congress authorized through the James Zadroga 9/11 Health and Compensation Act to provide medical treatment and monitoring to responders to the 9/11 attacks on the World Trade Center, the Pentagon, and the crash of Flight 93 near Shanksville, Pennsylvania. As a volunteer who provided “support services” at the World Trade Center site, Erin M. was entitled to the benefits.
“I felt like I didn’t have a right,” Erin M. said, but she applied for and received the benefits. The contact with the program also led to a surprise: The gastroesophageal reflux disease (GERD) she had begun experiencing after her work at the World Trade Center site, she learned, might be connected to her lung disease.
GERD is documented by the Centers for Disease Control and Prevention as the second-leading condition among responders and survivors of the terrorist attacks. And while a firm causal link between GERD and interstitial lung disease has not yet been established, they are frequently found together.
Erin M. now believes there is a strong possibility that her work at the World Trade Center site could have led to her lung disease, but she doesn’t dwell on it.
“There is nothing I can do to change it,” she said. “I have it. That’s all I know.”
She does wish she’d started her pulmonary rehab at UCH much earlier. “If I’d had it in 2006, I’d be a lot better off,” she said.
Grajeda, however, said Erin M. makes an impact on others in the program. He noted that she’s pushed the resistance level on the elliptical equipment as high as 9 on a scale of 20 – no small achievement for anyone, let alone someone with permanently scarred lungs.
“She’s an inspiration to other patients,” he said. “They say, ‘If she can do it, I can do it.’”
After her hour of activity on the machine, Erin M. sat on a folding chair to offer a few final words about the rehab that is now as much a part of her life as, well, breathing.
“It’s been pertinent also to the recovery of my mental health,” she said. “It’s good to be on this side of the dirt. This program saved my life.”