How to help IPF patients – from their point of view
Pete Mulliner, a patient with idiopathic pulmonary fibrosis (IPF) and an ambassador for the Pulmonary Fibrosis Foundation (PFF), considers himself one of the lucky ones.
He was diagnosed with the lung disease within a few months after experiencing his initial symptoms, rather than a few years – as is the case with many IPF patients. “I developed a nasty cough around three years ago and, through the process of visits to a general practitioner and emergency rooms, I finally got diagnosed in February, 2013,” Mulliner told FormularyWatch. “The diagnosis was picked up fairly quickly, whereas a lot of people go five to 10 years before they get a diagnosis.”
Related: Top 5 findings about IPF patients
In the summer of 2012, Mulliner began experiencing a “barking” cough and feeling out of breath, as many IPF patients do. “I would take a walk in the woods in back of my farm, and thought I was out of shape because I was so out of breath,” he said.
His general practitioner prescribed cough medication, which helped keep the cough under control, but the doctor also recognized that something more serious than a cold was occurring. So, the doctor ordered a high-resolution CT scan and a pulmonary function test (PFT) for Mulliner.
Mulliner learned a few interesting things when visiting the GP, which he hopes other physicians and health care practitioners will take note of. “In the process of talking to the doctor, he would give boilerplate answer when I asked questions,” Mulliner said. “Sometimes patients ask questions and sound stupid, but that’s all they know to ask. If doctors give more reasonable answers, patients can ask more reasonable questions.”
In addition, Mulliner recommends that physicians be in the moment when consulting with IPF patients. “Be here now. For that 10 to 15 minutes that I’m in the doctor’s presence, I want to be his focus and have him spend the energy on me. It’s critical to me; it’s my life.”