Submitted by David Skillrud, MD
Unlike many Americans, Pete Mulliner knew of idiopathic pulmonary fibrosis (IPF) long before he was actually diagnosed with it. His grandfather and an aunt both died from pulmonary fibrosis. He didn’t know it at the time, but his own diagnosis of this deadly disease would come much later.
Mulliner first began to question whether something was wrong with him in the summer of 2012. “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, but the medications he was prescribed had little effect. They were meant to treat a cold, not IPF.
Pulmonary fibrosis is a disease in which tissue deep in your lungs become thick and stiff or scarred over time. As the lung tissue thickens, your lungs can’t properly move oxygen into your bloodstream. As a result, your brain and other organs don’t get the oxygen they need. Sometimes doctors can find out what is causing lung scarring. For example, exposure to environmental pollutants and certain medicines can cause the disease. But in most cases, they can’t find a cause, which is why these cases are called idiopathic.
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.”
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.
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.
To learn more about the Pulmonary Fibrosis Foundation, the PFF Care Center Network and the facilities involved, visit PulmonaryFibrosis.org.
For more information or to schedule an appointment, you may contact Dr. Skillrud at 309-451-9500. He is Mayo Clinic trained in pulmonary and sleep disorders and his office has moved to their new location at 2010 Jacobssen Drive in Normal. He is accepting new patients and no referral is necessary.
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