No one would voluntarily join the pulmonary fibrosis (PF) community. After all, who would want to be a part of the rare disease world? When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, the idea of a disease-specific community seemed elusive. Most people I knew…
Columns
Mariners, for as long as their ships are at sea, rely on navigation skills to safely reach their destination. The tools and techniques they use have improved over time. While some ships may still post lookouts on occasion or use a lighthouse to identify hazards, the process of moving a…
My husband, Donnie, has been introducing our youngest daughter to the Marvel universe. Watching the movies together, I told her that she and Donnie are like Tony Stark, also known as Iron Man, because they both need a little mechanical help to keep their bodies working as well as possible.
“You have a condition called idiopathic pulmonary fibrosis, or IPF. There is no treatment or cure. You likely have three to five years to live. You should get your affairs in order.” What do you do with this information? How do you share it with others? This is essentially…
First in a series. If you’ve read my previous columns, you’ll know I live with lymphocytic interstitial pneumonia (LIP), a rare interstitial lung disease. What you may not know is how uncommon it is for LIP to progress into pulmonary fibrosis (PF), and yet, I am part of…
When my husband, Donnie, first became sick with pulmonary fibrosis (PF), we were unsure of the road that lay before us. His diagnosis finally came after specialized blood work and video-assisted thoracic surgery (and subsequent hospitalization). While we left the hospital with the answers we needed to begin treatment, he…
In August 2022, I was diagnosed with stage 3b chronic kidney disease (CKD), indicating moderate to severe kidney function impairment. I had anticipated this diagnosis for years prior to my bilateral lung transplant in July 2021. After being diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I…
The alarm goes off at 4:30 a.m. It is not a welcome awakening, but a stark reminder of the day ahead. The purpose of the alarm isn’t to ensure that my wife, Susan, and I are up to catch a flight that will whisk us away on vacation. It is…
Before my husband, Donnie, was diagnosed with pulmonary fibrosis (PF) in 2022, I hadn’t thought much about the importance of keeping good medical records in the event of an emergency. We were both generally healthy and didn’t take many (if any) daily prescriptions. Today, that looks much different, and…
What do blue lobsters, green eyes, and idiopathic pulmonary fibrosis (IPF) have in common? At first glance, they may seem unrelated, but each represents something rare and extraordinary. Imagine a game board with the overarching theme of rarity, featuring categories such as unusual sea creatures, unique physical traits, and…
