I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017 and subsequently received a bilateral lung transplant in July 2021. With IPF, whether you’re pre- or post-transplant, one of the things you learn quickly is that the growth of bacteria in the lungs can be deadly.
“I’m sorry” is a simple, two-word phrase I’ve used many times. For me, it can take two forms: It can be a statement of regret, or it can be a question. Because of my hearing loss, I use the latter to indicate that I need someone to repeat what was…
When I was diagnosed in January 2017 with idiopathic pulmonary fibrosis (IPF), I had gone under anesthesia only twice in my 59 years. Since my diagnosis, and especially following my bilateral lung transplant in 2021, I’ve required different types of anesthesia for more than 30 procedures. Most…
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,…
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