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Samuel (Sam) joined BioNews in November 2021 and writes his column from his home at Lake Anna, Virginia. His diagnosis of idiopathic pulmonary fibrosis in January 2017 began a journey of understanding, advocacy, research, awareness, and a personal commitment to “Make Every Breath Count.” As his disease progressed, he was listed for a lung transplant on March 19, 2021, and received a bilateral lung transplant on July 10, 2021. His plan for the column is to share his journey so you, too, can make every breath count.
I was only 59 when I was diagnosed with idiopathic pulmonary fibrosis. I still had so many things to do, and many life experiences were waiting for me. I hadn’t yet walked my daughter, Heather, down the…
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The availability and quality of healthcare patients receive is often based on where they live and what they can afford. This is especially true for those among us with a rare disease. That’s what health equity is all about.
During the course of having idiopathic pulmonary fibrosis (IPF) or any other rare disease, the role of the caregiver requires a large measure of patience, an ability to multitask, and the capability to pivot without knowing what lies ahead.
Is 90% of a message’s effectiveness dependent upon the way it is delivered? In terms of our rare disease, how important are the words we use to describe it? Many of us with a rare disease only learned…
How does a person with a chronic, progressive lung disease of unknown origin live their best life? How do they continue to live their best life in a pandemic? In the days immediately following my diagnosis in January…
During an appointment at my clinic shortly after my idiopathic pulmonary fibrosis (IPF) diagnosis a few years ago, I had a conversation with my pulmonologist about clinical trials. That discussion led to my personal commitment to support…
I’ve found myself daydreaming lately about a return to normal. I long for the days when we didn’t need face masks, when I could see someone’s smile during a conversation, and when hand sanitizer wasn’t the most frequent smell…
“Every day is a new adventure!” This is often my response when someone asks how I’m doing. It also seems appropriate when looking forward to what 2022 may hold for me. I faithfully use my calendar to keep track…
I thought I understood the role of a caregiver. It was based on what I learned and observed watching others. It turns out I did not fully appreciate the role until I had a caregiver. The role of…
Along this journey with idiopathic pulmonary fibrosis, my care team has had several different tools at their disposal. Some must be used in combination with others, while some are only used to gather information. Pulmonary rehabilitation,…
Welcome to my new column, “Make Every Breath Count.” Before I started writing it, I thought about what readers might want to know about me and why I’m writing this column. What details would make them want to continue…
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