30 Days of PF: Staying Active While Living with IPF

Photo courtesy of Malcolm Mann

Day 16 of 30

This is Malcolm Mann’s story:

My first inkling that my lungs were under stress was around the year 2000, when I developed a cough while exercising. In those distant days, I was a 50-year-old, slow-ish triathlete, and I was training around 10–15 hours per week in running, cycling, and swimming.

In 2005 and 2012, I had the cough investigated by specialists but it was not until a CT scan in 2015 that PF was suggested.

My initial pulmonary function tests were low-normal and anti-fibrotic drugs were not prescribed, but I remained stable for another three years. In 2018, I had a 10% decline “across the board.” This prompted my specialist to refer me to a major lung disease clinic in Sydney, whose doctors recommended a lung biopsy, which I agreed to. After I agreed, they asked if I’d like to be part of a trial comparing open biopsy with a new scope technique, which I also agreed to. So I had two biopsies carried out consecutively.

I was diagnosed with IPF and offered Ofev or Esbriet. Luckily, here in Australia, the majority of the cost is covered by the government.

I was on Ofev at first but I found it impossible. I switched to Esbriet last year and have been happy since, with few side effects.

My cough is still with me and getting worse, my breathlessness happens more frequently, and my exercise ability is still on a downward spiral.

The good news is I’m still swimming 1 km (about .62 miles) in the pool a few times a week and waiting for the ocean to warm up a bit. I’m still walking 5–6 km (about 3.5 miles) a couple of times a week, and keeping up with my age cohort, except on hills where I lag behind. The government pays for us Vietnam vets to go to the gym. I’m still mowing the lawn and cutting firewood and gardening, but I do get very tired after an hour or so.

My wife and I moved last January and are still setting up our new home. We also house-sit other people’s homes and look after their pets. We’ve been lucky to be able to do this around the world in the past.

I am at the lucky end of the IPF spectrum. I’m fortunate not to be on oxygen and to be able to remain active.

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.