BRITISH LUNG FOUNDATION

John Williams Story

Living with IPF, British Lung Foundation

15 August 2017

John Williams has been kind enough to share his story with us and both he and the British Lung Foundation has given permission for us to share it with you.

Please read on…

Until August 2013 I was a happy physically fit person. Naively, I thought that my good health would continue for ever. Until, that is, I suddenly developed a cough whilst playing squash.

The cough initially occurred during strenuous exercise but rapidly progressed to be more regular. After weeks of spending a fortune on every available cough remedy, without any benefit, I finally made a visit to my GP, who referred me for further investigation. Idiopathic Pulmonary Fibrosis (IPF) was finally diagnosed in February 2014.

The hospital consultant told me there was no cure for the disease and to come back in six months to be assessed on my rate of decline. I was devastated. I had never heard of IPF, had no information about the disease and was desperate to know what options, if any, were open to me, how my life would change in the future and the expected prognosis.

In the summer of 2014, I was accepted onto an IPF research trial led by Dr Toby Maher at the Royal Brompton Hospital, London.

Seeking out the latest IPF developments and ways of coping with and managing the problem was an excellent way of keeping myself motivated and hopeful for the future.

Maintaining a positive outlook has always been a challenge but attending specialist conferences is very reassuring. Knowing that IPF is being thoroughly investigated and researched.

In August 2015, while waiting for oxygen to be installed in my home I was extremely fortunate to undergo a single lung transplant at Wythenshawe Hospital, Manchester.    

However, I still suffer from the irritating IPF cough. I find attending national events, run by organisations like the British Lung Foundation, very helpful as I receive valuable information on how to manage my condition, like hearing the latest ideas on managing cough control.

About IPF

Idiopathic pulmonary fibrosis (IPF) is a disease which causes progressive scarring of the lungs making it more and more difficult to breathe. The causes of the disease are not known and there is no cure. IPF often kills with devastating speed: barely half those diagnosed with IPF are still alive three years later. Research into IPF is considerably underfunded, despite the fact that it kills 5,300 people every year. This equates to almost one in 100 UK deaths and is – more than conditions such as leukaemia. To find out more about IPF please visit the BLF IPF website: www.blf.org.uk/IPF.

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