I'm Howard, and been living with IPF for the last 5 years.
I've covered a little bit of my journey in another blog - caring at home, but thought I'd start s dedicated blog just for my IPF.
I've been on Pirfenidone for about 4 years now, and it seems to have been working - after all I'm still here, although perhaps not quite as well as I was 4 years ago.
I'm 75 years old - for the last 5 days anyway.
I go into my son's office every day, where I help out with a few things, give sage advice and causing trouble. It's a waste management and recycling company operating in the far south west of England. Head office in Exeter but with premises in Plymouth and a site in Cornwall.
I am also a trustee of the charity Action for Pulmonary Fibrosis.
I attend a support group for pulmonary fibrosis in Exeter, run a group myself in Plymouth, and am about to start a group in Torbay.
Pulmonary Fibrosis and Idiopathic Pulmonary Fibrosis in particular is an isolating disease. There are some 35000 people with the disease in the UK, but there are some indications that the number may well be considerably higher.
One feature every patient comes across is that at a doctors appointment, or at any medical appointment, if it's with a nurse or doctor they haven't seen before they end up having to explain what Pulmonary Fibrosis is, and how it's different to COPD.
This week I've just been finishing an article for The Lancet. I'll put a link to it when it's published.
I'll try to keep this blog going on a regular basis - so keep an eye out for me.
