When I was diagnosed with idiopathic pulmonary fibrosis in early 2017, my care team went to work ensuring my quality of life was the best it could be given the circumstances. A bilateral lung transplant in 2021 offered me a second chance at life, but getting the transplant required a…
Seven years ago, I sat in a hospital examination room in shock. I had just been diagnosed with idiopathic pulmonary fibrosis (IPF) and given two to five years to live. The doctor suggested I get my affairs in order. Then, before I knew it, my care team had begun…
Life with a rare disease is often a journey of discovery. With each test comes the possibility that my healthcare team will identify a new issue I’m facing. I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017 and had a bilateral lung transplant four years later. Because of…
What happened? Where did 2023 go? How can it be Jan. 2, 2024? Time seemed to drag when COVID-19 began to ravage the U.S. Many people with rare diseases, including the pulmonary fibrosis (PF) community, were heavily affected by the isolation. And not just patients, but caregivers, too.
For those who may be reading my column for the first time, it may be helpful to understand where I’m at in my medical journey and how it began. In late 2016, a chest X-ray indicated that something was wrong with my lungs. I was referred to a pulmonologist,…
I’ve been involved in equity issues for most of my adult life and have been an advocate for the rare disease community for decades. In the biblical story of David and Goliath in 1 Samuel 17, David had no intention of shying away from Goliath. Neither do I.
Each month, Brad Dell, the director of community content at Bionews, the parent company of this website, curates a list of special days of recognition ranging from the whimsical to causes that have special meaning to both individuals and entire communities. From the whimsical side of the December list,…
Have you seen the Apple TV+ series “Ted Lasso“? In it, Lasso is a fictional U.S. football coach who was recruited to manage a soccer club in the U.K. He was recruited because he knew nothing of European football. The club’s owner, Rebecca Welton, wanted the team to…
This column is my 100th for Pulmonary Fibrosis News. Thank you for allowing me to share my journey with you every week. I’ve been humbled by so many of you who feel comfortable sharing your stories with me and other readers. I’ve recently returned from the Pulmonary Fibrosis…
My mother passed away in the final hours of Thanksgiving Day three years ago. Just a week before that, I lost my stepsister, too. Understandably, it was a time of deep loss for me. At the time, COVID-19 was spreading at an alarming rate, so, like many others, I…
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