Living with lung disease: When life catches up with reality and I'm overwhelmed by déjà vu.

On 21 May 2015 I did a post about being told the day before that I had 'established fibrosis of the lungs'. The news came as a shock, especially when I read that the average life expectancy after diagnosis is '3 years'. Since then I have done occasional posts about my condition. In early-June 2015, during my visit to the City Hospital, I was asked how long I had had a heart problem? In the space of 3 weeks I learnt that I had an incurable lung condition and a heart problem. Scans of my lungs and my heart in the weeks after resulted in my heart condition taking priority and I blogged about that as well (2017 looks good). On 23 February 2017 I blogged about life going on hold as I prepared for open heart surgery four days later. I did a post-op blog on 6 April 2017. I left my health alone until November just gone, when a chest infection hit me hard, which I blogged about on 9 November (link here).


What I have is Ideopathic Pulmonary Fibrosis (IPF), no symptoms as yet but my lung capacity measure has fallen from 90% in 2015 and 2016 to 86% post heart op in 2017, then on Thursday I learned that I am down to 81% and have been referred to a local twice weekly 6 week exercise and assessment programme (dates awaited and which my consultant says 'will be hard work') and in May I will be prescribed one of two medications which might help delay further scarring of my lungs. I have had nearly 3 years to come to terms with my fate, but I was told very early on that progression can occur rapidly, so I have to hope that it will slow down. 

The point of telling you this is because logic says identifying potential lung problems should be routinely part of examining all chest x-rays (if it was then so many would not be going unnoticed). There may be no cure or guaranteed methods of stabilisation as yet for ILD etc. but the longer sufferers are aware of the condition (like me) the better, and, and it must be better for medical teams too.  More data should lead to better outcomes - which is why screening really matters!

I should add that I have never smoked and my heart problem was one I had lived with from birth. My surgeon said, jokingly, it was a good job I'd never run for a bus. Today I feel as if I have been here before, but this time I know it will pass and I will get things into perspective again.

The medication I will almost certainly be prescribed in May is rationed by NICE (National Institute for Health and Clinical Excellence). Your lung capacity has to be between 50 and 80% to receive the medication. The British Ling Foundation has objected more than once to the ban, pointing out that PLF sufferers have a prognosis worse than many cancers. You can read the BLF press release here  dated 9 June 2017. Being on the prescribed the medication will, at best, extend my life a couple of years before I die like my fellow sufferers from suffocation.

In September 2017 BLF published a 56 page report — A map for better care: making effective care pathways for people with interstitial lung disease (Click here for link). It is plain common sense. The report catalogues NHS and other shortcomings in the health and care system. It takes me back to a 1976 consultative document prepared jointly by health departments across Great Britain and Northern Ireland:

As a report and a set of recommendations it has never been bettered in my view. Its signatories included Barabara Castle and Merlyn Rees. Need I say more. At the time I was chair of East Birmingham Community Health Council and the British Pregnancy Advisory Service's Development Officer (1971–1983) and our focus was very much on prevention. Tony Blair and Gordon Brown's Labour governments poured money into the NHS and welfare without a plan and they abolished CHCs! Tories and Liberals, in contrast, have doggedly pursued cutting and privatising services (nor can Labour escape its active role in the latter). Time and again prevention policies have been ignored (flu jabs are an exception).

I have described myself in almost every post about my healthcare as 'one lucky bunny'. Listening to people and hearing their stories I wonder how people with lung disease manage to go undiagnosed for so long? 

The truth is that in the absence of a 'prevention culture' in the NHS people will not present with their cough or breathlessness soon enough and even if they do it may go undiagnosed. A conversation 30 minutes ago with my brother's wife provided a good example. How can a man who has suffered 3 heart attacks have his lung condition undiagnosed until the point when he can walk no more than a few steps?

PLF is not a gentle slope down which one falls until you can no longer breathe. It can come within weeks even with the best of care. Luckily Nottingham is a good place to live with PLF and I am grateful for that, but the time has come when one of the best ways I can help myself and fellow sufferers is to write about it, for make no mistake even in the absence of pain and discomfort (at the moment) I am a sufferer and so are those who love me!