30 Days of PF: Living with the Uncertainty of Pulmonary Fibrosis

Photo courtesy of Tom Johnson

Day 5 of 30

This is Tom Johnson’s story:

I was diagnosed with idiopathic pulmonary fibrosis (IPF) nearly 12 months ago. Since that time, I have undergone four lung CTs and 6–7 pulmonary function tests at my regular healthcare provider and at the VA (Veterans Affairs).

I’ve done substantial internet research on IPF, including prognosis. Most of the mortality tables suggest a 50/50 chance of surviving 2.5–5 years. However, I have been taking one of two FDA-approved therapeutics (Ofev), which is touted as being able to potentially extend life expectancy by many years perhaps. My pulmonologist originally gave me a range of 3–15+ years. One year has now gone by, but I don’t have a better mortality estimate than I had a year ago.

At 74 years of age and a former heavy smoker, I quickly reconciled myself with the “finality” of IPF — I have lived a long life and have always understood the possible health detriments of my lifestyle habits.

Besides the obvious physical compromises of this debilitating condition (e.g., supplemental oxygen, curtailment of exercise programs, drug side effects, loss of weight and strength), I also deal with the daily uncertainty of how much time is left: will I enjoy Christmas this year, or will I still be struggling along in 2035? Or somewhere in between?

With kids, grandkids, and siblings residing in three other states (and a currently raging Delta variant of COVID-19), I would really like to have a better time estimate to plan accordingly. Visits with family and friends need to be considered, and family finances need to reflect the “new reality.” Expectations need to be established and managed.

I suppose I could look at it more as a glass half-full: be thankful you have some type of survival probability since most people don’t have a clue until they suddenly are a part of the past. Still … 3 to 15+ years? Really?

Pulmonary Fibrosis News’ 30 Days of PF campaign will publish one story per day for PF Awareness Month in September. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPF, or read the full series.