(BPT) – Unlike many Americans, Pete Mulliner knew of idiopathic pulmonary fibrosis (IPF) long before he was actually diagnosed with it. His grandfather died from pulmonary fibrosis the year Mulliner was married. “Granddad was the go-to guy in my world,” Mulliner says. “He taught me how to use tools, renovate houses, how to think clearly and logically and how to approach life.”
Three years after his grandfather’s death, Mulliner lost his great-aunt to pulmonary fibrosis. He didn’t know it at the time, but his own diagnosis of this deadly disease would come much later.
A Certificated Flight Instructor who teaches pilots to respond safely no matter what, Mulliner first began to question whether something was wrong with him in the summer of 2012. “My wife and I live on a small farm near my hometown,” he says. “I noticed that when I took a walk outdoors, I’d get out of breath. I figured I was out of shape and that I needed to walk more.”
But his concerns worsened after a common cold left him with a barking cough. He sought treatment at an urgent care center but the medications he was prescribed had little effect. They were meant to treat a cold, not IPF.
According to Dr. Gregory Cosgrove, chief medical officer of the Pulmonary Fibrosis Foundation (PFF), misdiagnoses of the disease are common. “The symptoms of pulmonary fibrosis are non-specific and shared by many other and more common lung diseases,” he says. “As a result, patients are often misdiagnosed initially and an accurate diagnosis may be delayed by months or even years.”
Weeks after Mulliner’s first symptoms, he found himself in the ER with chest pains and an inability to breathe. “My coughing was so violent that I was pulling muscles in my chest,” he remembers. Additional physician visits and a CT scan discerned he had a lung disease but Mulliner wouldn’t learn he had IPF until he visited a pulmonologist.
He was at his daughter’s home, playing with his grandchildren, when his doctor first called and told him he had IPF. “It was like a kick in the gut,” Mulliner remembers. “I felt very alone. Then I realized I wasn’t the only one suffering from this.”
In this dark moment, Mulliner thought back to his pilot’s training. “You can’t take the pilot’s seat to wonder ‘what-if’ and ‘why me’ so I didn’t allow myself to do it then.” He went looking for support groups and found the Pulmonary Fibrosis Foundation. “It was comforting to know that there was an advocate out there – that there was a voice speaking that much louder about the need to find a cure for this disease,” Mulliner says. “I wanted to add my voice to it. I signed up on the PFF’s Facebook and LinkedIn pages and felt an immediate sense of connection. I wasn’t so alone after all.”
Pulmonary fibrosis (PF) may occur as the result of more than 200 different interstitial lung diseases. Dr. Cosgrove says one of the biggest ways the PFF can help patients is by sorting through the confusion that exists around PF. “With education and a better understanding of the different diseases that may cause PF, patients, family members and physicians not familiar with PF are often empowered,” he says.
Mulliner has felt the benefits of the support of PFF and he’s taking his battle with IPF one day at a time. “It has put finiteness to it,” he says of how IPF has affected his life, understanding that most people with IPF die only 2-3 years after diagnosis. “I am aware there is an end coming; I’m just trying to extend it. At this point in time, if I didn’t know I had IPF, I wouldn’t know I had IPF.”
And while Mulliner lives his life, others are working to save it.
In January, the PFF announced the expansion of its PFF Care Center Network, which is comprised of medical centers with specific expertise in treating PF and IPF, collectively utilizing a comprehensive, multidisciplinary approach to patient care and providing access to resources and support for both patients and caregivers. With the addition of 12 more sites to the Network, there are now 21 leading medical centers in 20 states. The PFF will further expand the PFF Care Center Network as funding permits, with the intention of adding additional sites to the Network later this year.
“As a leading advocate for the pulmonary fibrosis community, we are dedicated to advancing the care of people living with this deadly disease, and this starts with providing greater access to experienced care teams. The PFF Care Center Network fosters collaboration between sites and the sharing of best practices,” Dr. Cosgrove says. The PFF offers up-to-date information online as part of the PFF Patient Communication Center and in print, guidance on where to find treatment and support and information on regional and national events.
To learn more about the Pulmonary Fibrosis Foundation, the PFF Care Center Network and the facilities involved, visit PulmonaryFibrosis.org.