Shortly after my diagnosis of idiopathic pulmonary fibrosis (IPF) in January 2017, I spoke with my pulmonologist, Dr. Steven Nathan, about participating in research. One of the first projects I joined was the Pulmonary Fibrosis Foundation (PFF) Patient Registry. The PFF Patient Registry began following patients in 2016,…
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I’ve been writing this column for almost six years. Throughout that time, I’ve had the privilege of interacting with other patients living with idiopathic pulmonary fibrosis (IPF), a progressive and life-threatening lung disease. While IPF is considered a rare disease, it doesn’t always feel that way given how many…
One of the more difficult parts of my journey has been remembering those I’ve met or learned of who’ve passed away from pulmonary fibrosis (PF). There are so many. It’s why we must all move forward in pursuit of treatments and a cure. The pulmonary fibrosis community must…
During my pulmonary fibrosis journey, I learned that one of the best things I could do for myself was to become an active voice on my care team. As a patient diagnosed with idiopathic pulmonary fibrosis (IPF) more than five years ago, I wanted to know more about this…
By definition, a progressive illness is one that worsens over time. When I was diagnosed in 2016 with idiopathic pulmonary fibrosis (IPF), a life-threatening and progressive lung disease, I was told by a pulmonologist that simple tasks would become difficult as the fibrosis in my lungs worsened. Before IPF,…
My inspiration for this column came from looking out my window, which was built high up and close to the ceiling. I call it “God’s Window,” because every morning, I can look up to the heavens, and every night, I can see the stars. It’s beautiful when the sun is…
If you have spent any time on the internet, you have likely found some incredibly useful, accurate information. At the same time, you likely have encountered misleading claims, missed an opportunity to have large sums of money transferred to you, and received some bad advice. The ability to exchange information…
One of the most common symptoms of idiopathic pulmonary fibrosis (IPF) is the chronic cough. While patients may have other characteristics of a cough, such as bringing up phlegm, most of the ones I know living with this cruel and life-threatening lung disease have a cough that is…
My 2017 diagnosis of idiopathic pulmonary fibrosis changed all our plans. Over the course of our journey, my wife, Susan, found herself responsible for many tasks I’d normally take on inside and outside of our home. Susan has told many people over time that if she asked me…
My friend Chase and I sat in my treehouse one sunny afternoon looking across the arid valley between my childhood home and the towering crest of the Sierra Nevada. We were 10. We noticed a plume of smoke rising from the hills, which soon turned into a blaze that destroyed…
