My lungs — Little miracles can happen with a little help from yourself

Three years ago almost to the day I was diagnosed with what was first described on the x-ray report to my GP as 'established fibrosis of the lungs'. I had the  x-ray at Nottingham QMC Hospital on 8 May 2015. By August 2015, after tests and scans, it had become Ideopathic Pulmonary Disease — 'ideopathic' meaning the cause of my lung fibrosis (also described as scarring of the lungs) is unknown, since I have never smoked nor, knowingly, worked with asbestos or the like. 

From 15 to 18 I worked as a trainee animal technician at the Chester Beatty (cancer) Research Institute, then in South Kensington, London, and among my responsibilities was looking after rats I put into smoking machines for varying periods of time with different numbers of cigarettes five days a week in a large shed on the roof of the building. I inhaled a lot of tobacco smoke during those years, plus what you picked up at work, on a bus, cinemas and the like. No smoking areas were few, but I avoided it the best I could: travelling downstairs on buses; in the one non-smoking carriage then on each London Underground train; going into the little room set aside in a few pubs for non-smokers.

In truth it was as good as impossible to avoid tobacco smoke and the awful smell of nicotine, it was in our homes, on our clothes (not that the latter has changed). Back in 1959 millions smoked, despite the evidence (I also killed the rats after different periods of time, pinned them out and exposed their internal organs before removing them in the presence of a lab technician to be weighed and dissected. I wish I could say that I left for ethical reasons, but I didn't despite having reached the conclusion that what we were doing was cruel to animals). Sadly all too many people still ignore the evidence about both smoking and animal experimentation. The point of telling you this story is because my lung scarring might date from my first job.

Susan would also mention my catching whooping cough in 1977, which wasn't diagnosed immediately and I ended up being ill for five months. On a good few occasions then, when every breath of air was being fought for, I thought I was breathing my last. It was the closest I ever felt to death until the second night after my open heart surgery at the end of February last year when I had some kind of post-operative infection and four people stood at the end of my bed and I wondered which one of them was going to take me, but I was in no pain, the morphine saw to that, and I felt 'other worldly', outside of myself looking on. It was a surreal experience and by mid-day, eight hours later, it was all as if it had never been. And my open heart surgery was a direct result of being diagnosed with fibrosis of the lungs — had I not had that x-ray I may have had a heart attack and died. I have a lot to thank the thoracic team at Nottingham City Hosital for).

I made the point in my first post about my condition on 21 May 2015 that having lung disease was going to be part of my life – NOT my life. There have been a few posts since about my heart condition (which it turned out I was born with and could have killed me had I been a runner, a footballer etc. and unlucky). In the event my second post about my lungs didn't appear until earlier this year when tests in January showed that my lung capacity was down to 81% and I could be prescribed NICE restricted medication for a year at first to see if the medication stabilised my condition. Last Thursday I went to the City Hospital to find out which of the medications I would be getting — the one which causes diarrhoea or the one which makes your skin sensitive to sunlight (the small booklets I was given to read about each medication seem to suggest the chances of either happening were c.10%)

On arrival at the City Hospital I was sent for a chest x-ray and a couple of breathing tests, (my last previous tests having been in January this year), followed by a brisk walk with my thoracic consultant. What I was not expecting in a million years when a few minutes later he came and collected me from the waiting room was the significance of the sheet of A4 paper he was holding. 'Good news, remarkable though not unusual. Your lung capacity has increased by 20%, so you need no medication'. He then went on the show me the test results and to give me copies of my first tests in 2015 and Thursday's tests, plus showing me my x-rays over the past three years, one after my open heart surgery showed how my chest had been wired to together, now disappearing from view. 'As you can see little difference between now and when we first saw you, really good'. We had a long chat. Good news can be as overwhelming as bad news. My consultant puts the improvement down to my exercising, lifestyle and positive attitude and the rest of the day passed in a haze. I was overwhelmed.

In three months my lung capacity has recovered from 81% to 94% — actually 1% better than I was at the time of my first tests in June 2015!

Back then the prognosis wasn't good and I fall into the camp that wants to know. In my last blog I wrote about a British Lung Foundation report about my condition and how it could be detected earlier using x-rays and I discussed this with my consultant on Thursday. Lung disease is not curable like some cancers. The most those diagnosed young enough can hope for is a lung transplant when the condition gets bad enough. You can live with it , dormant / stable for years, then a chest infection or other problems can cause it to flare up and it can quickly become terminal. My own condition declined prior to my open heart operation from 93% to 90%, then five months after the op I was at 86%. A chest infection in November laid me low for close on a month and this was reflected in my January 2018 test results, when my lung capacity was down to 81% — which why I qualified for the NICE controlled medication. Now, thanks to a little miracle in which I played a part, my lung capacity as at Thursday was measured at 94%! A fact I am still struggling to come to terms with three days later, but the fact is my good news doesn't alter the original prognosis one iota!

In fact it spurs me on to continue attending my weekly Breathing Matters exercise group every Thursday morning in The Pearson Centre on Nether Street, Beeston, a ten minute walk from where I live. Since the end of January I have walked at least 30 minutes every day* (missing a few I admit) and have been doing some after breakfast exercises for many years now. I am about to add 5 minutes worth of upper body exercises every day before tea. Not a lot, but based on my experience they can make a difference.

You may wonder why I bother to blog about this and at great length. The answer is simple enough. If one person follows my example and benefits than I would make this post every day. It matters that much. Time and again when asked how I feel I always reply 'One lucky bunny'. I may have made some of my luck, but so can we all.

NOTE: * An hour working in the garden counts as a 30 minute walk in my book — which is where I'm going now.

In the January post I went on about the importance of prevention and health care. The reason why lung disease and prevention is mostly associated with smoking is because people don't want to know if they have a incurable medical condition (smokers are the one group who do know the high risk they run). The trouble with this attitude is that by the time people to find out it's too late!  The breathlessness and tiredness they have put down to old age has reached the point where they are close to needing oxygen or, because they are lower than 50% lung capacity, they can't get the NICE controlled medications which might stabilise the disease/fibrosis.

If we knew early enough (and this is where my one lucky bunny bit comes in) then you have a degree of control. You can help yourself if you listen to what you are told and take advantage of the support you are offered. For me it's been a little bit more complicated than most, but I am evidence of how it can be for some if they know soon enough and for me this means promoting a voluntary LUNG FIBROSIS SCREENING PROGRAMME — in other words choice — just like there is with some cancer and cardiac conditions.

Our healthcare services have too many Cinderella conditions and services, so I am not about to argue for lung disease to get special attention. It is a choice we have no need to make. The answer is simple and our MPs could make the decision tomorrow if they were so determined. We are a rich country. The problem rests with our financial priorities and the truth is they are not healthcare related, nor are they to help the young get a good education or to help the poor and disadvantaged. We elect far too many self-serving MPs. At the end of the day we are the architects of our own misfortune, yet there is cause to hope. The world is full of decent, caring, people and many of them are to be found in the NHS which does a fantastic job despite the best efforts of all too many in Parliament to destroy it.

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!