My dad was diagnosed with Idiopathic Pulmonary Fibrosis earlier this year after having a CT scan carried out. We just went to the hospital that our GP referred us to and for the past 10 months have just taken their diagnosis as being correct and obviously very concerning.
In our last visit to the hospital 2 weeks ago I was getting concerned that the doctors did not seem to be that confident in answering our questions about the state of my dad's condition and how bad it was so we decided to contact the BLF for further information.
The first thing they said was to watch a new webinar that had been produced by a specialist in IPF and that they would follow up with us after watching it. Well that webinar was fantastic. It was really informative and took us through the condition thoroughly, how it would be diagnosed and what possible treatments might work and what was in a trial state.
It made us realise that the hospital that my father was being seen at did not truly understand this condition and that we needed to get second opinion.
Last night we went to see a specialist at the Royal Brompton who, after looking at the CT scan is not convinced that IPF is present in my dad's lung and is going to carry out some further tests (which were never offered and talked about at the current hospital).
The relief we all had after that appointment was immense. We still need to wait for the new tests but the outlook seems like IPF may well be incorrect and there may be another diagnosis which may not be as serious.
This whole episode just makes us realise how little is really known by doctors about some lung conditions but what puzzles us is why our initial doctors did not advise us to see an IPF specialist if they themselves could not be that confident of the diagnosis.
That webinar about IPF is really useful and I hope that anyone who is diagnosed with IPF is pointed in the direction of this webinar so they too can judge whether or not they are getting the right diagnosis. It would probably help if all Respiratory consultants all saw it as well before they make such worrying judgements about someone's health.
Thankyou to the BLF for pointing us in the right direction.
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