Year of Birth





Melbourne, Australia



Short Bio

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.

Type of Diagnosis


Current medication regimen


Lung transplantation status

eligible, considering later

Supplemental Oxygen


Best advice for PF symptom management

I don’t have much to contribute, I’m afraid – I admire very much the reports of those who stay fit, and I’m sure I need to do more in thsi regard, either to slow decline or jsut to enjoy life more!!  I also appreciate reading about how others are coping with Ofev – but sadly, I have found a formula that works for me yet…

Are you currently taking an anti-fibrotic medication?


How did you find us?


How long have you or the person that you are caring for had PF?

Diagnosed formally in 2019 after one year observing gradual DLCO decline.

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