Navigating a Power Outage When You’re on an Oxygen Concentrator
My mom, Diana, relied on a plug-in oxygen machine to breathe, and the power was going to be shut off for days. This was back in the late summer of 2019, when she was still on the lung…
Columns
The Power of PF Storytelling, and a Plea for Change
Stories have been a catalyst for conversation for centuries. Generations of families are often weaved together by the narrative of a loved one’s past, and by the stories that have shaped our evolution. There is so much to learn through the stories of those who came before us. As a…
‘Stay Strong and Never Hide Your Illness’
I will celebrate my two-year diagnosis anniversary on Dec. 11. On this day, which changed my life forever, I was finally diagnosed with lymphocytic interstitial pneumonia. My head was spinning when I heard these words. What is this illness? I wondered. Is it curable? It must be curable, I…
Receiving My Diagnosis and Hopping on the IPF Roller Coaster
In 2014, I was living my life without a care in the world. Oh, I had a few health issues, but none that worried me at the time. Therefore, I had scheduled a vacation in Sweden for July. Little did I know I would soon be “Riding the IPF Roller…
Dear Survivors, We Can Do Better When It Comes to Sharing Our Stories
When someone receives a life-changing diagnosis, it can feel like their world is caving in. A diagnosis changes a person’s landscape, alters their expectations, and obstructs their former worldview. Some people understand what this is like, while others, no matter how hard they try, just don’t get it.
I Can No Longer Enjoy These Luxuries Because of IPF
If I could give strangers one gift, it would be that they never take their healthy lungs for granted. I’ve longed for a life with fully functioning lungs for 1,854 consecutive days. That’s how long it’s been since I was diagnosed with idiopathic pulmonary fibrosis (IPF) at the age of…
When Touch Is Forbidden, Food Becomes My Love Language
Last June, my parents and I stayed in a house in San Francisco while my mom, Diana, recovered from a single-lung transplant. Note that this was 2020 — the year of COVID-19. Because I was…
Hobbies Help Us Recreate Ourselves in Times of Change
I’ve been thinking a lot about growth lately. And about how even as we grow up and find out who we are, we never stop changing. It can be hard to face change or to reinvent yourself when you are comfortable with who you’ve become. In the…
Eliminating Unexpected Sources of Mold in the Home
In a story about living with idiopathic pulmonary fibrosis (IPF), mold would be an antagonist. An abundance of literature outlines the dangers to the lungs of persistent mold exposure, including lung cancer, aspergillosis, and pulmonary fibrosis. In September 2019, I wrote about household hazards that patients with PF…
For Our Family, the Word ‘Caregiver’ Opened Our Eyes to Reality
In the year before my mom, Holly, underwent a double-lung transplant due to idiopathic pulmonary fibrosis (IPF), “caregiver” felt like a cursed word to us. When my mom was diagnosed, the nurse care coordinator invited her to a pre-transplant support group. The invitation…
