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!

Home-made maps, writing and a garden – 2017 looks good

2017 will be a big year for me. One of the biggest ever in fact. I'm seventy-two years old and counting. Open heart surgery promised by my surgeon for 'January' and my life depends on it, so that makes January pretty big in the order of things!

It's also odd finding out that you were born with a congenital heart condition and have managed to survive so long. Others with the same condition have been less lucky, whilst others live longer than me without knowing. In the order of things I am one lucky bunny!

Me aged 2 getting in the habit.

Had I not cut the grass in April 2015 at our new home in Beeston for the first time, I would not have found out that I had a condition known as fibrosis of the lungs (I did a post about finding out on 20 May 2015). My first visit to the City Hospital led to the doctor I saw asking me 'How long have you had a heart condition?' to which I replied 'What condition?' 

This set off a whole load of parallel tests and scans, which resulted in a visit to the Cardiology Unit at the City Hospital in August 2015 to be told that, at some point, I would need open heart surgery, but at first they would monitor me for six months, as I had no symptoms. I was walking as normal, pulling a loaded shopping trolley up Wollaton Road a couple of times a week. All this at the same time as my lungs were being monitored. My lungs were assessed as having '90% normal normalcy' and that has remained the case after another summer of tests and scans. 

My wonderful thoracic doctor decided I was OK for heart surgery and this led to another visit to Cardiology and another summer of scans (including 45 minutes in the large MRI scanner at the QMC during which I fell asleep twice) and procedures, during which they discovered that my aortic heart valve has two cusps instead of three (a condition I share with 1–2% of people), which has resulted in me being diagnosed with 'severe aortic stenosis'. It has now reached the point where I can no longer pull my shopping trolley when full and whilst I can still walk some distance on the flat, I can no longer manage hills without becoming breathless. I did think this was a symptom of my lung fibrosis, but the hospital told me it was my heart.

For some months now I have described myself as 'a half-day person', pacing how much I do. I tire easily and sleep a lot more, but on the plus side not a week passes by without lunch with friends, four of whom go back to my Wembley days, where I grew up, whilst others came into my life in the 1970s and 80s, then there's family and grown-up grandchildren. Lunch on Thursday (yesterday) with one of them, talking politics and history. Life doesn't get much better. I am surrounded by love and is yet another reason to consider myself one lucky bunny.

Topping it all is Susan, who came out of nowhere in 1975 to take my heart and life by storm. We took off like a rocket and were planning our future together within a couple of days.

The last eighteen months have made me think about life, and I have decided that my post-op world will be occupied by my maps, writing, gardening, delivering for the Labour Party, and friends. Family are a given  

I tell you all this because this blog will become a different beast from 1 January 2017. It will be home to my Beeston maps and related bus maps, plus a link to my writing. I really have enjoyed the blog, but life is moving on.

Happy with the me I am.

Robert Howard.

Walking around eyes wide shut

My last post was about news which changed my world and I would like to say thank you to those who have contacted me and to bring readers up-to-date with what has happened to date, but first a couple of photographs I have taken in the last few days.

I have stood under this sign countless times loaded down with shopping, waiting the little to carry me up the hill, yet until last week the wonderful Commercial Inn pub sign never registered. I must have looked at it eyes wide shut. Now I see every time. I must find out more about the scene depicted.

I was also slow to notice the demise of the Belle & Jerome Café Bar and its replacement by Rye. From what I have read elsewhere, Rye is owned and managed by the same people who ran Belle & Jerome, so it can be fairly described as a rebranding exercise. Looking at the price list, it appears to be offering themed food days for £10 including a drink. I will go and try the coffee before too long. I do like the frontage and the signage. According to Beestonia the name is a nod in the direction of Beeston Rylands as well as alcohol.

Right now though, Susan and I are so pleased that when we decided to downsize from Lenton last year after thirty-five years we were determined to look no further than Beeston or Chilwell (OK, we did look at Bramcote and Sandiacre too, but in each case just once, honest). Our main reasoning was to do with being close to shops, public transport and hospitals.

We only ever needed the latter big time back in 2006, when Susan was diagnosed with breast cancer and we found ourselves visiting the City Hospital regularly for about three months. The attention and care was excellent then and it has been during the past month for me. Since the 8 May I have been to my GP or hospital nine times, with three hospital visits already booked for June, and the attention and care from the local NHS has been fantastic.

In my case I can only describe myself as one lucky bunny. My visit to the Nottingham City Hospital Respiratory Assessment Unit (RAU) resulted in better news than I and Susan dared expect after the x-ray report from the QMC two weeks ago, which said I showed signs of ‘established fibrosis of the lungs’. My young doctor moved fast — hence the visit to the City Hospital last week.

The specialist doctor we saw ordered another x-ray, which was identical to the first one on 8 May and she said what the x-rays showed was ‘some scarring (of the lungs)', but not enough to produce the symptoms, so it is unlikely that I will need any treatment now. Having presented early they want to see what happens, as they don’t know what causes scarring/fibrosis in 40% of cases

There have since been further blood tests, a chest scan and next week I have a heart scan, because when the hospital doctor examined me she identified some calcification of the aortic valve of the heart, not unusual in someone of my age.

My cough can probably be traced back to a virus I had before Christmas for three weeks and the accompanying cough in some people continued for up to two months afterwards. I then cleared out the loft, followed by some reaction to cutting grass for the first time in twenty-seven years and the blood I saw was probably from small blood vessels in my throat rupturing.

I have been told to avoid crowds and public transport during the winter and my GP is being told that if I ever have a chest infection, I am to be prescribed anti-biotics. On hearing this, my daughter Alicia’s comment was ‘No more buses for you Dad’.

As you can imagined all this comes as a relief, but I am not sure life will ever be ‘normal’ again. It is the closest I have come to examining my own mortality. How I am going to miss those winter bus rides!

It will probably be another couple of months before I fully understand what has happened, but I will try to find some way in which I can do more to help promote public awareness of lung fibrosis and how people can best support and fund research into finding a treatment just to arrest its progress. If I understand what I have read, the medical profession and researchers have given up trying to find a cure — and that is a dramatic measure of just how bad lung fibrosis is!

For now, to repeat myself, I am one lucky bunny!

Our NHS is a truly wonderful institution, which I am sure we all know from personal experience. Occasionally it will get things wrong and when it does they need to be put right ASAP.

Living in Beeston, we are truly blessed when it comes to easy access to hospitals. A close friend, who lives in Gainsborough, has a knee problem and will  be coming to the QMC later this month to see what can be done. Beeston, truly, is a great place to live.