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…
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.
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…
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…
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…
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…
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…
A study published early last year revealed that patients living with a rare disease have a greater risk of developing anxiety and other mental health issues compared with people with more common diseases, The Lund Report noted. While more than 6,000 rare diseases have been identified around the…
Outpatient pulmonology appointments are common for people with idiopathic pulmonary fibrosis (IPF). The frequency of these appointments varies, depending on how the disease progresses, but spending a day at the hospital for various tests is familiar to many of us. Since my IPF diagnosis in 2016, the number of these…
March 11 was the one-year anniversary of the World Health Organization declaring COVID-19 a pandemic. Since then, I’ve been reflecting. I’ve learned a lot this year about myself and others. The hardships we’ve all faced have shown many of us how resilient and adaptable we can be. Many of…
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