When I recall the times that loved ones were in the hospital for extended periods, I can still feel the energy of the waiting rooms. ICU waiting rooms have a particular hum about them, a palpable tension created by people in limbo, including those often too stressed to…
Columns
Learning how to balance personal tasks with my health needs has been a difficult lesson since my diagnosis of idiopathic pulmonary fibrosis (IPF). It’s something I have not yet mastered. Previously, I sought recommendations from my healthcare team about how to do this better. They encouraged me to think of…
Last week was Global Tracheostomy Tube Awareness Week. The mother of a child with complex health challenges started it. Her goals were to educate people and normalize her daughter’s trach. While Trach Week focuses on the use of a trach as a long-term treatment, it got me thinking about my…
I am taking a deep breath as I announce to my beloved online community the following: I have COVID-19. I also have idiopathic pulmonary fibrosis (IPF). Until now, I thought this combination would be fatal, but I am here to tell you that this isn’t necessarily true. I’m a fairly…
Dear Christie, It’s 10 p.m., Dec. 26th, 2018. You just got this crazy phone call from Mom. She told you that her disease — which you still don’t know the name of — has a “cure.” You knew she…
As a young adult living with a chronic lung disease, I’ve heard horror stories of general physicians (GP) and specialists failing to listen to their patients. In the rare disease community, this is a common complaint by patients, and many of us wind up supporting one another when frustration boils…
Last weekend, my column turned 1! There were only a few weeks in the past year that I did not write a post for Pulmonary Fibrosis News. This means that I have had about 50 opportunities to share my family’s story with the world. I have tried to…
Most of my friends and family members would say I am an open book about my chronic illness. After the initial shock wore off from being diagnosed with a life-threatening lung disease at 28, I decided to share my story through writing. Serena Lawrence, the late senior managing columns…
This past week, I felt things. Like, I really, finally felt things. They were real feelings, not forced, and came without judgment. It’s been longer than I want to admit since I have experienced any emotion without it being tainted by anxious judgment. I have written many columns…
Self-isolation has become a form of survival for those with pulmonary fibrosis during the COVID-19 pandemic. I am a single-lung transplant recipient and have a compromised immune system. COVID-19 can devastate a perfectly healthy person, and someone with my current state of health is at even greater risk. The self-isolation…
