Colin Failes talks to PharmaTimes about his experiences with the devastating lung condition
How were you diagnosed with IPF?
I went to my GP concerned about my breathlessness when walking up hill and a constant low-key pain in my chest. I was immediately referred to A&E because the GP was concerned that I might have a heart problem. A doctor in A&E, after tests and listening to my chest, thought that I had some lung fibrosis and referred me to the chest clinic. I had further a X-rays, an MRI scan and a lung biopsy to confirm the diagnosis of IPF.
At what age were you diagnosed, and how did you cope?
I was 63 (I am now 67) when I was diagnosed with IPF. On being given the news I was shocked because I didn't feel ill and just thought that was the way one was at 63, a bit older and not so fit. I coped by going online and finding the British Lung Foundation for more information. I put my life on hold in a way, as I digested the fact that I could be dead within three years [according to the BLF, almost half of people with IPF do not live for more than three years after their diagnosis. The lung health charity highlights that there are now new drugs available that can improve life expectancy by an additional two years.] I am self-employed so was able to organise time to research the condition and work things out, but my income was badly reduced as a result.
What have you been told about your prognosis?
I was told originally by the consultant that prognosis was difficult because disease progression varies from patient to patient – it can be quite fast or very slow. According to my six monthly lung tests so far, I am in the slow progression group.
What treatment have you received?
I have had a six-week course of lung rehabilitation therapy, which was very useful in understanding the workings of my condition and how to manage it on a daily basis. I am prescribed Ranitidine 150mg twice a day. As far as I understand, one school of thought is that acid reflux is a possible cause of IPF, but is it? I am not aware of having acid reflux myself.
Were you given any information on clinical trials investigating new therapies for IPF?
Yes, for pirfenidone [Roche's Esbriet]. It was mentioned to me by a member of the pharmacy team at Guy's Hospital where I am an outpatient, but I did not qualify because my FVC [forced vital capacity, used as a measure of pulmonary function in IPF patients] was above 80 percent at the time.
Would you consider taking part in an IPF clinical trial?
Are you happy with the NHS care you have received – could any aspect have been improved?
I am very happy with my NHS care and have a very good and frank relationship with my consultant.
What do you find the most difficult aspect of the condition?
Pacing myself when doing things and fending off a bit of depression when I realise that the condition is getting worse not better.
Do you think the depth and quality of information offered to IPF patients in the UK is adequate?
No way, but the British Lung Foundation is the best source o f information around.
What do you think are the key challenges facing patients with IPF in the UK?
Living with the disease, facing the general public's ignorance about the condition, and the lack of a cure for IPF.
What message would you give patients newly-diagnosed with IPF?
Exercise and stay as active as possible. Whatever you do don't sit on the sofa and do nothing – this is the worst thing you can possibly do.
What is your greatest hope/fear for the future?
My greatest hope is to travel as much as I can, and also crack the stand-up comedy circuit (for the over 60s). My greatest fear is being bedridden and on oxygen 24 hours a day at some point in the future. θ