Biography

I first noticed velcro sounds when I breathe in 2012, and these were highlighted to me by one of the doctors admitting me for a prostatectomy in late 2017, but I did nothing about it until scarring was noticed on a cancer-rleated CT scan in 2018.  When I had my lung function checked in 2018 my DLCO was around 70% and FEV around 85%.  UIP in the lower lungs on both sides remained completely stable for the next 18 months and I am about to have this checked again, but the DLCO has come off to be somehwere in the range 55 – 60% (I have had about six measurements and have noticed that one particular operator gets results that are significantly below my usual consultant – a very unhelpful diagnsotic indicator, I think).  Lung biopsy is not generally seen as a worthwhile risk in Australia and the pulmonologist diagnosed IPF based on the UIP pattern and gradual decline in DLCO, with me starting Ofev six months ago.

I have worked in R&D and the oil and gas industry all around the world, but the only thing that I can tie the lung scarring to is an extended episode of house renovations in London in 2009, when I was regularly covered head to toe in fine plaster dust as a result of sanding back my inexpert plastering efforts.  I remeber that on quite a few occasions it took several days for the fine dust to empty out of my nose completely, so there’s no doubt I was breathing a lot of it in – pretty dumb for someone supposedly familair with construction-related safety risks!!

During 2019 I had a year of hormone therapy for prostate cancer recurrence and experienced a few days of what seemed like severe lung capacity loss, but my haemaglobin had fallen from the mid 180s to high 130s due to the loss of testeosterone and I was never sure how much this contributed to the problem.  Aside from that episode, and a growing realisation that my breathing sounds are either getting louder (or I am just more focussed on them), I have been fine.  I visited the US with one of my Sons in 2019 and had no real problems even at what for an Australian are the quite lofty altitudes in Yellowstone.

I felt fine on Ofev for the first four months, but have recently been experiencing nausea and occasional vomiting – I hate taking Ofev because of the threat of nausea and the fact that I have to eat for breakfast, sometjing I frequently skipped.  Between the extra eating and post-hormone therapy effects, I have gained about 15kg – and that too is impacting my fitness and happines – so I’m firmly in the “I hate Ofev” club!

Overall, I know that deep inside I have a forlorn hope that the scarring I have is “one off” rather than progressive – but the (annoyingly unrealiable) DLCO says otherwise…  failure to come to terms with the diagnosis is supposedly characteritic of IPF, and I reckon thsi may well be down to the seeming inability to prove causality and the unrealiable means of monitoring progress.  I have a PhD in physics and am an avid reader of medical R&D reports, so I have commenced monitoring the people working on various IPF “cures” – to my mind, significant advances in halting and even potentially reversing scarring will happen within a ten year horizon – too long for most IPF sufferers given the general rate of decline… not so sure about people like me who have been diagnosed early and put on anti-fibrotics, but I do find it hard to be too optimistic on thsi score, given the long cycle to drug approval.