Columns

Recovering from an Acute Health Setback Is Challenging

Many Pulmonary Fibrosis News readers know that during the last few months, I have had several acute illnesses. As a patient living with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease, I ended up quite sick as a result. Since mid-November, I have been recovering from pneumonia, influenza A, strep…

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…

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