Gordon Butler’s story and message of hope

Action for Pulmonary Fibrosis > Living with Pulmonary Fibrosis > Personal stories > Gordon Butler’s story and message of hope

Gordon and Kath Butler

I was diagnosed with Pulmonary Fibrosis in February 2007 thanks to my wife, Kath, insisting I went to the doctors with a continuous cough.

Ever since having pulmonary tuberculosis in 1962 I have had, or so I thought, a weak chest, suffering regular bouts of bronchitis and pleurisy. I was also a very heavy smoker and obviously, in the light of modern knowledge, this couldn’t have helped in any way. I gave up smoking in 1986 and the chest infections seemed to diminish in frequency as did the coughing.
Then in 2006, after a holiday in Switzerland, returning to the industrial atmosphere the coughing became more acute.

My GP put me forward for chest x-rays and following those he arranged for me to see a lung specialist, Dr. Gisli Jenkins, at Nottingham City Hospital. The result was more scans and x-rays and then the consequent diagnosis – pulmonary fibrosis.

Dr Jenkins was excellent in giving me the bad news; fully explaining the progressive nature of the condition and, as yet, its in-curability.

He didn’t give any prognosis as to how long things would take but put me on acetyl cysteine which he explained helps some people but not others.

Fortunately I appear to be one of those it really helps. At this time I was 66 years old and was already retired. My wife had also retired 5 years earlier, following a brain tumour, but fortunately has recovered sufficiently to lead a very active and normal life and provides great support to me.

It was when leaving the hospital that the seriousness of it all hit me. We had been discussing holidays and where and when to go.
I turned to Kath and said ‘That’s it; we’re going travelling while we still can.’

Her reply was, ‘Yes and you’re drinking no more cheap whisky.’

So far we’ve managed both. Kath achieved her ambition of seeing the Rockies and travelling on the Rocky Mountaineer and I fulfilled a wish to see the narrow gauge railways in the Hartz Mountains of Germany.

Any more trips we now count as a bonus.

It was Dr Jenkins who asked me to consider becoming part of the charity, Action for Pulmonary Fibrosis, and I am only too willing to do what I can out of thanks for giving me a longer life than might otherwise have been the case.

I am now volunteering for the charity and contacting some of those people who have raised funds to get their personal stories.

For a long time the illness hardly encroached on my life and regular visits for lung function tests showed minimal progression. Like many things that change slowly you don’t notice it until a reasonable change has occurred. This is it in my case; I began to find walking uphill harder, or carrying anything heavy and moving too quickly also made me breathless. This where I am now and we have to take it into account when planning holidays, days out or even working around the home. It is hard at times to reconcile what I used to be able to do with my current abilities.

Another aspect of travelling is the insurance. We are finding it harder and harder to get travel insurance at a reasonable rate and have been turned down by some companies. Other companies don’t even recognise the illness as existing and so won’t even quote.

The previous few paragraphs may sound down but we don’t accept down. We do what we can within my capabilities; not lying down and not giving in.

I regularly exercise going to classes specifically designed for people with lung conditions of any sort. I am a member of our local ‘Breathe Easy’ group under the auspices of The British Lung Foundation and so I am bringing knowledge of the condition to a wider audience and in my role as volunteer I hope to extend this with beneficial results for the charity. I write, both for pleasure and for Radio Nottingham, one day I may even be published. I am a keen photographer but have had to restrict outdoor work to where I can get easily.

My message to anybody suffering with Idiopathic Pulmonary Fibrosis is – don’t let it get you down, fight it and live to the full.