Michael’s Story – Idiopathic Pulmonary Fibrosis (IPF)
My name is Michael and I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in 2009. It was almost by accident that I got diagnosed as I was originally visiting a Vascular Surgeon for an opinion on my late evening ‘feverish spells.’ Suspecting I had cancer because both of my parents had died from it, the specialist sent me for an initial CT scan which showed otherwise but it did confirm an abnormality.
After the initial diagnosis of IPF by a local specialist, they advised that there was no treatment except for large doses of a drug with multiple side effects, which I declined. I eventually consulted a further four specialists, not expecting any of them to find a different diagnosis to the original but I needed to be sure of the final outcome.
Not wanting to partake in the initial, prescribed treatment, I looked into what other treatments were available. The benefit of being with a major hospital is that they have access to the latest drug trials. I subsequently took part in two trials and after completing one successfully I was given the drug free of charge.
Initially I had some problems with the drug but realised that I had to persevere with it in the expectation that it may help. Lucky I did, as it was shown that the drug was effective in slowing the progression of IPF. I have now been on it for the past four years and have continued to tolerate it quite well – it does have some nasty side effects but not taking it is not really an option for me.
Fortunately I have not been totally incapacitated by my illness and I am still able to do most daily tasks. Ironically, the side effects from the medication probably cause most of the problems I experience like lethargy and eating problems but currently I am able to manage without supplementary oxygen which is a huge bonus.
My words of wisdom to newly diagnosed patients would be to not necessarily take your initial diagnosis as final. You must be very proactive in all aspects of your journey with the disease and not just sit back and wait for the inevitable. You have to take control right from the beginning and stay very positive. I have found that you must not dwell on your illness but try to stay focussed on the wider issues and try to live as normally as possible. As a happily married man with one daughter and two grandchildren I want to be around for as long as possible to enjoy my loving and supportive family.