Living with IPF — a column by Charlene Marshall

Charlene is a fiercely independent 30-something year-old who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.

What It Means When I Say I Had a ‘Bad Clinic Day’

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…

How COVID-19 Has Shifted People’s Lives and Habits

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…

The Pandemic Is Stealing My Already Limited Time

After being diagnosed with a life-threatening lung disease like idiopathic pulmonary fibrosis (IPF), many patients reluctantly accept that their life span will be shortened. Even if we’re lucky enough to receive a lung transplant, it isn’t a cure, and it essentially swaps the management of one chronic illness for another.

My Age Prevents Me From Participating in Clinical Trials

Next month is the five-year anniversary of when I first heard the words “idiopathic pulmonary fibrosis.” I was diagnosed by a pulmonologist at a local respiratory care center, where I’d finally been referred after 13 months of dealing with persistent shortness of breath, dry cough, and fatigue. I try…

Rare Disease Day Brings Me Hope as a PF Patient

We talk a lot about the importance of finding and maintaining hope in the rare disease community. While I agree this is important, I also want to acknowledge it isn’t always easy while living with idiopathic pulmonary fibrosis (IPF), a rare and life-threatening lung disease that eventually steals your ability…

6 Ways to Help Others Manage Pandemic Stress

Since the start of the pandemic, levels of stress, frustration, and confusion have risen to troubling levels. It seems that many of us also are experiencing more concern over new, rapidly spreading coronavirus variants. When I first heard about the variants, I broke down and cried. I felt defeated…

In Memory of Donnie Vapor: We’ll Never Forget You

It happens far too often in the pulmonary fibrosis (PF) community: the unexpected and sudden loss of a fellow patient. I’ve lost some dear friends since my idiopathic pulmonary fibrosis (IPF) diagnosis nearly five years ago, and it never gets easier. Last week, the sudden loss of Don Prager, known…

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