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The Journey from Shock to Acceptance: Living with Pulmonary Fibrosis

Photo: Courtesy of Bob Weber, Pulmonary Fibrosis Foundation

Bob Weber was just an ordinary golfer. That is, until a diagnosis for pulmonary fibrosis. Thankfully, with the right support, he learned to accept it.

Bob Weber remembers the beautiful 70-degree January day in Phoenix when he experienced the first signs of pulmonary fibrosis (PF), a progressive and debilitating lung disease affecting more than 200,000 Americans. He was climbing a hill on the golf course headed towards the green. Suddenly, he couldn’t catch his breath. Weber thought this was a sign of a returning heart disease. Thankfully, he caught his breath and carried on.

The diagnosis

Having been a heart patient, Weber went to see his cardiologist. He went through a battery of tests that took about three months. After all the testing, his cardiologist said, “Bob, there’s nothing wrong with your heart. There’s nothing I can do for you.” He referred Weber to a pulmonologist.

The pulmonologist sent Weber for more tests. A high-resolution CT scan revealed the typical honeycomb scarring pattern apparent with pulmonary fibrosis. Weber asked two questions: “How do you treat this?” and “What is the prognosis?”

Weber’s pulmonologist suggested medications to slow the progression of the disease and gave him a life expectancy of two to five years. The news was quite shocking. Facing his mortality, Weber realized it was time to get more informed. He immediately sought care from the Pulmonary Fibrosis Foundation’s Care Center Network site at St. Joseph’s Hospital in Phoenix.  

Finding help

He also joined a PF support group. About the first meeting, he recalls, “I felt like a kid in a candy store — there was just so much information to absorb.” He realized how little he really knew about this deadly disease. He especially liked the unvarnished information he received from PF patients and caregivers. Many of whom had been dealing with lung disease for years; some had even received lung transplants.

Weber’s experience has taught him to act on his doctor’s advice as soon as possible. “Listen to your doctors, take action, and fight. You do have some control on the progression of the disease,” says Weber, who now serves as a volunteer ambassador for the Pulmonary Fibrosis Foundation. In addition to taking medication to slow the PF’s progression, he had surgery to address GERD and uses supplemental oxygen at night. It has been three years since his diagnosis. During that time, he has lost little lung function and has been feeling quite well.

Moving on

Today, he still plays golf. He learned how to manage his breathing better; sometimes, his shortness of breath gets to about the same as it was before his diagnosis. But that doesn’t stop him. He drives a golf cart and enjoys playing. In fact, Weber uses a round of golf as a health benchmark: if he can sustain 18 holes, then he is staying even. For a pulmonary fibrosis patient, that is a win.

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