Columns

6 People You Will Meet in an ICU Waiting Room

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…

How I Manage My Energy Reserves with Pulmonary Fibrosis

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…

My Take on the Trach: It’s a Good Thing

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 Have COVID-19. Here’s What Happened

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…

Honoring a Patient’s Knowledge of Their Own Disease

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…

I’m Feeling Bad — and That’s Good

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…

Why I’m Feeling Grateful During the COVID-19 Pandemic

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…