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…
Columns
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…
I’m in the business of validating people’s feelings. As a therapist, I’m called upon to listen actively to clients and validate how difficult a particular situation has been for them, even as they work through it. I enjoy this part of my work because everyone is affected in unique ways…
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…
Traveling is complicated with a chronic illness. When you require supplemental oxygen to breathe or struggle with hypoxia on airplanes, things become even more challenging. This has been my experience with idiopathic pulmonary fibrosis (IPF). IPF is a life-threatening and progressive lung disease that often leads to…
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,…
‘Tis the season of giving, a time when the spirit of benevolence fills the air. During the holidays, we’re encouraged to give wholeheartedly and with grace, which creates an atmosphere of joy and peace. However, the season’s festivities prompt some reflection on the nature of giving. Why limit this…
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,…
