Shining a Spotlight on Pulmonary Fibrosis in September

By: PFF Ambassador Bob Weber

Four years ago, I was diagnosed with idiopathic pulmonary fibrosis (IPF), a type of pulmonary fibrosis (PF) with no known cause. My journey began on a beautiful January day. I had just parked my golf cart and climbed the hill to meet my buddies on the elevated green when, suddenly, I had great difficulty catching my breath. Having been a heart patient already, I figured it could be heart-related and contacted my cardiologist. To my surprise, my cardiologist told me there was nothing wrong with my heart and handed me a card for a pulmonologist. I had never seen one before but decided now was the time.

About a month later, I was diagnosed with IPF. Not knowing much about it, I asked my pulmonologist how it was treated and what the prognosis was. When I learned there were few medications to treat the disease, and that somebody with X-rays like mine could expect to live just two to five years, my mortality was brought into question.

My attitude changed a little bit during the ride home that day. My wife and I stopped at Costco and I started buying more things than I typically would because I realized time could be of the essence. That was four years ago, and today, my attitude is better. I’m still playing golf, although I’ve had to learn how to manage my breathing a little better. In fact, I’m using the completion of 18 holes as a health and PF benchmark – if I can sustain that, then I’m staying even.

The moral of my story is: don’t wait too long to start conversations with your doctor and heed their advice. This journey started with great fear for me, but the fear lessened as I became more knowledgeable.

September marks Pulmonary Fibrosis Awareness Month, which is presented by the Pulmonary Fibrosis Foundation (PFF) to drive awareness of PF. More than 250,000 Americans are living with PF and interstitial lung disease (ILD), and these disorders are characterized by varied amounts of inflammation and scarring that damage the ability of the lung to transfer vital oxygen into the blood. Other common symptoms include persistent, dry cough, shortness of breath, and fatigue, and people over the age of 60, current and former smokers, and those with a family history of ILD are at higher risk.

As a PFF Ambassador, I work to provide education about this disease to help drive earlier diagnoses, advocate for needed research, and ultimately find a cure. On September 25, I am joining patients, families, and friends across the country for the virtual National PFF Walk Day. From California to New York, Texas to Wisconsin, and everywhere in between, those impacted by PF will bring the spirit of the PFF Walk to their communities and take one step closer to finding a cure for this a debilitating, incurable lung disease. After all, this year marks the five-year anniversary of the Walk program, so it is my hope that we see record level of participation and accelerate research and improve care for those with PF.

Learning, taking action, joining a support group and using the resources of the PFF has given me a sense of control and I am grateful my condition has held stable for this long. I know every person’s journey is different, but I really do believe your personal wellbeing is greatly affected by your attitude and willingness to fight this disease every way you can.

For more information about PF, visit www.AboutPF.org. To learn more about National PFF Walk Day, visit www.pulmonaryfibrosis.org/get-involved/events/pff-walk.

About the Pulmonary Fibrosis Foundation

The Pulmonary Fibrosis Foundation mobilizes people and resources to provide access to high-quality care and leads research for a cure so people with pulmonary fibrosis will live longer, healthier lives. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. The PFF has a four-star rating from Charity Navigator and is an accredited charity by the Better Business Bureau (BBB) Wise Giving Alliance. The Foundation has met all of the requirements of the National Health Council Standards of Excellence Certification Program®, and has earned the Guidestar Gold Seal of Transparency. For more information, visit pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733).