Hopefully now getting better

At the Arena Session at the Medical school, one of the students asked the question - why do I keep going, why don't I just give up.

The context being that this IPF is incurable and there is no sign of a cure, and as any new drug needs several years of tests, trials, and decision making before it can be used - what hope is there for me, as I've already been diagnosed for over 5 years and the median life expectancy after diagnosis is 3 to 5 years.

 This was further compounded by a conversation I had with the lead researcher at the medical school and my consultant on Tuesday, We were talking about the fact that some therapies give short term benefit - make you feel better and give a better quality of life, but have in fact been shown to actually speed up the progression of the disease.

Most notably steroids in the case of IPF, although they are still widely used long term for PF, but also Pulmonary Rehab, this is one I've been worried about for some time, and also possibly supplementary Oxygen.

My own theory is that using supplementary oxygen encourages people to do more physical exercise than they should and consequently overstretches the lungs, causing more scarring - in the same way that pulmonary rehab does.

Back to the original question - why don't I just give up? I guess it's just in my nature to just keep going, it's possibly being in a perpetual state of denial. It's easier to sit in my office behind a desk keeping myself occupied, than sit and home worrying, and you never know, I may help someone find the elusive cure.

I admit though, I do learn a lot about the disease every time I meet with others who have knowledge of the disease.

Diagnosed in 2014

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.