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 a new reality — lung fibrosis

Yesterday morning I went to the Derby Road Health Centre and left knowing that a chest x-ray on 8 May had shown 'established lung fibrosis'. The enormity of the news became clear within hours. Whilst I now wait my first appointment at the QMC and tests that will tell me what kind of lung fibrosis I have and how advanced it is, the web has already told me and Susan some things. Most importantly, there is no known treatment, that it will get progressively worse and that average life expectancy after diagnosis is three years.

Three years actually means little in the absence of knowing how far advanced my lung fibrosis is. Even the word 'established' can be interpreted in different ways. I was seventy-one last Saturday. Thinking right now about how long I have left is a minor issue in the absence of a detailed diagnosis and it may be some weeks before I have more information.

The web is a wonderful thing and yesterday Susan and I both trawled the web in search of information which is both understandable and easily available. Probably the best site I found was called Breathing Matters to the University College London Hospitals.

If you have stayed with me this far, then you may be wondering why I am writing about this very personal (and terminal) condition. Simply, I set out to write a blog about living in Beeston and the issues which interest me, and that will continue as long as I am able, but lung fibrosis is now part of my life in Beeston and will not go away.

Blogs about living with cancer are not uncommon, but I have yet to find one about living with lung fibrosis by a person with the condition. I am sure they must be out there in the ether somewhere, so I will continue looking.

At this moment, apart from my cough and a slight tightness on my chest, I feel fine, but since being ill with flu/virus for three weeks in December last year, a cough has persisted. Walking to and from Beeston town centre, up and down Wollaton Road, catching the little L10 into the city centre, getting to know Beeston Fields better as I delivered newsletters and leaflets for the Labour Party, there was no hint of breathlessness, although I did notice I was slowing down. It was taking a little longer and put that down to a gammy left knee.

What kicked off the process leading to my x-ray was cutting the grass in our back garden on for the first time. I went to bed early, sneezing and coughing. I put it down to a allergic reaction to cutting grass for the first time in over twenty years, but the reaction did surprise me a little, given that from 1980 until November last year we had lived in a house overlooking Lenton Recreation Ground and seeing the grass being cut with yards of our front door by a tractor and catching the lovely smell of newly cut grass afterwards.

I woke the next morning still coughing and as I did, over the bathroom basin, I was coughing blood. This persisted, in ever smaller amounts over the next two days, by which time it was a Monday, so I made an appointment to visit the Derby Road Health Centre and see a doctor. Susan said to me at the time 'Did you tell the receptionist about coughing blood'. 'No' I replied, adding something to the effect that I was no longer coughing blood, but I knew it was something I needed to get checked out.

Ten days later I was seen by a doctor, who listened to my chest with her stethoscope  and said 'It all seems fine, but we'll get an x-ray and have your knee x-rayed at the same time'.

I was given a letter to phone and make an appointment, which I did for 8 May. After the x-ray I was told that I would only hear from my doctor if the x-ray showed something, and that it would take about seven days. In fact it took just five days for the DRHC to call and ask me to go in and see the doctor about the results of my x-ray — which is what I did yesterday and is why I am sitting here at 7am posting my first blog about living with lung fibrosis. For that is what it is. Part of my life. Not my life. It will be a record of sorts.

My main concern is for Susan, my wife, the love of my life. I have already told some close friends about my visit to the doctor and that I have lung fibrosis (what kind no one knows yet, which is why I have been referred to the QMC). Others I will tell today.

The doctor did a 'finger tip test' to check whether it might be 'pulmonary fibrosis', but my fingertips and toes are not swollen and I can see through the tips of my two index fingers when they are placed together (swollen finger tips and toes might indicate pulmonary fibrosis. At this moment all this is academic.

It is a relief to have a diagnosis; that I have not been wasting anyone's time — for that is how it feels when you have what seems like a small problem. My hope is that I have caught it early. The two blog posts I found related to men still alive six/seven years after being diagnosed, albeit with the help of oxygen. I hope that will be me, beating the odds and having a reasonable quality of life until the end.

At the end of the day these postings to Beeston Week about my living with lung fibrosis are for me and those I love, but I hope others find them helpful too.

Susan had breast cancer in 2006, which was caught early and she made a full recovery. We talked at length yesterday about what is happening to me and I am sure we will go on talking. I had promised Susan I would try to live until I was 99. My mother died five days short of her 86th birthday in 2006. My step-father was 84 when he died two years later and my maternal grand-father nearly 80 when he died in 1976. My maternal grand-mother died aged 69 in 1960. I never knew my father, or who he was, and grew up with my grand-parents. One thing is for sure. I will now spend more time writing the memoir I promised my grand-children back in 2010. How I wish I knew more about my own grandparents and great grandparents (and I know a bit).

When loved ones die you often have little or no notice. When it happens, my passing will still come as a shock to Susan, my family and close friends, but I have the chance to help them prepare. I hope it is still years away and I will fight my lung fibrosis as best I can. I owe them and myself that.

FOOTNOTE, Thursday lunch-time, 21 May:

Just taken a phone call from my doctor. She has got me an appointment at the City Hospital for 1.30pm next Tuesday. I look forward to finding out more about what will be happening over the coming weeks and getting a more detailed diagnosis.  Robert.