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.

MullinerHe 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.”

NEXT: A "scary" diagnosis

Physicians should also be aware that the diagnosis of IPF is “scary” and should be handled carefully. Unfortunately, Mulliner was told by his doctor’s receptionist that he had lung disease and that it would be a 5-week wait to see a pulmonologist. “For most of us, the diagnosis is very frightening. It’s a death sentence.”

However, things turned around for Mulliner’s health when went to a second general practitioner, who was responsive with answers to Mulliner’s questions, and acknowledged when he did not know answers to certain questions. “He said, ‘You need to see a pulmonologist. If you don’t see one within two weeks, I will set it up for you.’ I felt like I was being cared for, as opposed to being handled.”

Related:Doctors understand IPF patients' concerns

Mulliner obtained the IPF diagnosis after his pulmonologist met with a group of other physicians to go over patient cases. “A radiologist confirmed the condition by looking at the CT scan,” Mulliner said.

Mulliner’s condition also improved when he began taking one of the IPF medications that was approved by FDA about a year ago. He also takes an allergy medication and a medication to break up the mucous in his lungs.

“Now, I have an annual checkup with the GP, and he thinks I am doing fantastic,” Mulliner said

Read next: 3 top concerns with IPF and comorbidities [SLIDESHOW]