A funny thing happened the other day on the way to the Pulmonary Fibrosis News Forums. In the blink of an eye, everything changed, and off I went to the emergency room at Inova Fairfax Hospital in Virginia. I should start at the beginning. On June 12, I began…
Columns
My husband, Donnie, suffered from gastroesophageal reflux disease (GERD) for several years before the onset of his lung issues, and we were surprised to learn of the connection between GERD and pulmonary fibrosis (PF). While, to my knowledge, the scientific community isn’t 100% certain of that relationship, we do…
I recently received my first Rituxan (rituximab) infusion. Most people might think of treatment as starting when the medication enters the IV. But for me and many others, it starts long before that, with paperwork, phone calls, authorizations, appointments, and a level of persistence that we patients rarely get credit…
Storytelling is a learning tool as old as time. History is made up of eyewitness accounts and recollections of a certain time or place, often augmented by official records. I’ve seen discussions recently on social media and in the Pulmonary Fibrosis News Forums asking for people to describe the…
Note: This column describes the author’s husband’s own experiences with anti-fibrotic medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. For those of you who haven’t read this column before, my name is Kylene, and my husband, Donnie, was diagnosed…
The need for naps tends to evolve throughout one’s lifetime. When my kids were babies, it was good to let their young bodies rest midday, giving their parents a break and helping them gradually adjust to longer days. As they got older, they outgrew the need for naps. I had…
Are you familiar with the phrase “one size fits all?” When you see it, how do you react? For me, unless it’s on a baseball cap with an adjustable strap, I’m skeptical. But I’m not always a skeptic. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in…
Someone out there holds the key piece of evidence needed to advance research toward a better therapy, treatment, or cure for interstitial lung diseases, including pulmonary fibrosis (PF). Since my diagnosis of idiopathic pulmonary fibrosis (IPF) nearly 10 years ago, I have met some of the smartest people…
Living with pulmonary fibrosis means living with a chronic cough that doesn’t let you forget it. I hate it. It feels like it’s slowly taking more from me than I realize. When the cough spells begin, my body becomes rigid and tight. My breathing turns short and…
Are you familiar with the website Healthgrades? The site allows patients to search for medical professionals and lets them rate their experience with a specific provider. The ratings, or grades, range from 1 to 5 stars. You can read about other patients’ experiences before making an appointment. When I…
