“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…
Columns
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…
What do we want? A therapy and a cure! When do we want it? Now! Call-and-response is a tactic often used in protests. Raising many voices together to deliver the same message is a powerful force. Together as a community, we can deliver that message. The Pulmonary Fibrosis Foundation‘s (PFF)…
How was Stonehenge constructed some 5,500 years ago? How were the stones moved, and who moved them? Why were the monolithic statues erected on Easter Island? Do questions like these weigh on you? I enjoy a good mystery, and my journey with idiopathic pulmonary fibrosis (IPF) has all the…
Note: This column describes the author’s own experiences with Protonix (pantoprazole), Prograf (tacrolimus), Rapamune (sirolimus), and Forteo (teriparatide injection). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Pulmonary fibrosis patients, no matter where they are in their journey, require…
