Coming to terms with my IPF

by Jerry Craig, Dartmouth, NS

IPF has been a surprise and a life-altering challenge. I’m nearly 71 years old, and was formally diagnosed three years ago. I now know that my disease process has been going for a lot longer but had always been diagnosed as something else, such as pneumonia. This unfortunately led to countless, useless prescriptions of antibiotics; to post-nasal drip; to possibly tuberculosis (simple tests proved otherwise). Luckily, my new and astute physician decided that the problem was greater and a referral to a respirologist confirmed IPF.

IPF was a new term to me and didn’t seem to fit with a lifetime of non-smoking and being generally fit. Like any new challenge my diagnosis has come with its revelations. My breathing became laboured and simply walking exhausted me — stairs, hills and steep grades were killers. Basic chores involving any form of exertion not only slowed my ability to do things but my desire to do them. Did I mention that I have a mild chronic clinical depression too? Depression doesn’t help one bit.

I was prescribed Esbriet at first but experienced intolerable side effects so the drug was exchanged for OFEV. Is it working? Well, my spirometry test shows little minimal change in the last 6 months. Oxygen therapy goes on all night and whenever it seems needed. I got a pulse/oximeter to help confirm the O2 levels. They are inexpensive and handy.  I make sure that I get daily exercise, nothing too strenuous but at least sustained. Our two dogs and their regularity of wanting “walkies” gets me out. Weight loss seems to be part and parcel of IPF and mine has dropped from 90kg to about 67kg now, so you have to eat what you need to maintain health. My wife is an excellent cook and knows what I can and can’t eat, so fixes meals and portions that agree with me.

Given that I am a life-long non-smoker and never knowingly worked in a hazardous environment, I couldn’t fathom my diagnosis. Why me and IPF? However, I do have it and see no point in pointlessly dwelling on changing the past. As my journey continues, I try to ‘stop wondering why’, and focus on ‘living in the now.’ I encourage others to do the same, and to reach out to the CPFF if they ever need help, or just someone to talk to.

I’ve included a recent photo of my wife, Vickie, and me on our 50th anniversary in April. She’s as much affected by my IPF as I am, and has to carry the burden of what I can no longer do.​