IT BEGINS 2009 ish – And coming to terms with your diagnosis

14613648-Education-and-learn-concept-pixelated-words-knowledge-is-power-on-digital-screen-3d-render-Stock-PhotoMORE THAN THREE MILLION people in England are living with COPD. This lung disease kills about 23,000 people a year in the UK. The major cause of COPD is smoking, even after you have stopped you are still at risk. People who have perhaps stopped smoking for 20+ years previously think they are safe but can and do develop it. About 20% of cases are work-related, triggered by exposure to fumes, chemicals and dusts at work. COPD can also develop in long term asthmatics. Annoyingly, some people who suffer from COPD have no obvious reason for the onset, see COPD story of a never smoker! Premature deaths from COPD in the UK was almost twice as high as the European average in 2008 and premature mortality for asthma was more than 1.5 times higher, AND its increasing even though smokers are decreasing.

There is a real need for further education of the general public about this disease because if it is caught too late it can be difficult to control. The key to living a good quality life with this disease at the moment is to catch it early before too much permanent damage has been done. However, even if a lot of damage has been done there are ways of slowing progression and living a better quality of life. But people need to have the knowledge in order to carry this out!

Every Journey has a Story and Mine Starts Here ……

It was 2010 at Halifax Hospital and I shall never forget that day, the Doctor said, ‘you have COPD (Chronic Obstructive Pulmonary Disease) and you are in the very severe category!’. I knew I had asthma but this was a different kettle of fish. ‘You have emphysema, which has caused you to have a very low lung capacity’, he said ‘and this cannot be reversed’, the rest he said just blurred and went over my head as I was in shock.  I was stunned as I left his office, I started to cry and said to the nurse, ‘I want my life back!’ Of course I knew something was wrong and already had been told that it might be COPD but not emphysema and not as bad as he said it was.

This is a typical situation for Doctors to throw this life altering kind of information at patients, then, leave them to fumble about not knowing what to do, and I did a load of fumbling about after that because no one told me what to do. I was just left to my own devices for a long time. And when knowledge is the key to slowing or even halting the progress of this disease it’s unforgivable.

I was on my own and had to drive home on my own and I was to find out that this journey would pretty much be on my own for the next few years.

ribbon_separater(3)

It was me that pursued a diagnosis. I was scared to find out but I paid £300 for the privilege of being given the worst news l have ever had in my life. Initially  I paid privately to go to a BUPA clinic to see a chest specialist.

I had one spirometry test previously and it had been very poor,  my GP said that it couldn’t possibly be correct and I had the worst technique he had ever seen, it was 33% and I wonder now if it was right! I was a non smoker at the time and hadn’t smoked for about 18 months when I had that test done. I was working and it was 2007.

Now it was 2010 and I needed to know what was wrong, I didn’t think for a minute that it was anything serious but I wanted to get to the bottom of it. Talk about pandora’s box but I did need to know! I went on my own to the clinic and showed myself right up! I walked into the specialists office sat down on the chair and was told to blow into the spirometry machine which I just couldn’t do. It was terrible, I found it so very difficult I almost wet myself with the effort,  during the test I went very dizzy and thought I was going to pass out. At this point he said he wanted to see me in his clinic in Halifax through the NHS and we could pursue it in more detail but he didn’t really say how bad things were just the fact that I had COPD and that was as much as I could handle at that time.

My first reaction to this news was yes shock, then I was upset and then Iacceptance-6 went into denial. They have got it wrong! I did smoke but not much, in fact I hardly smoked anymore. Oh yes, they must be wrong I’m just unfit and overweight! And this state of mind carried on for a few not months but years!

I started smoking full time when I was 26, before that it was just now and again. Now I am aware that for some people smoking is toxic and it’s like playing a game of Russian Roulette you just don’t know who it will effect until you are crippled from it.

Very few people actually know what COPD is and how to handle this horrible, potentially life destroying disease, its causes, management, outcomes and what you can do to help yourself and stop or slow down its progress. It is one of the modern world’s most common killer diseases and it is today the third leading cause of death after Heart Disease and Stroke. So why don’t we know more about it?

Excerpt from W.H.O

“leading causes of death in the world, 2000 and 2012. Ischaemic heart disease, stroke, lower respiratory infections and chronic obstructive lung disease have remained the top major killers during the past decade”

 

This is what my blog is all about educating anyone who would like to know about this subject and showing my progress as I work through remedies. both exercise, nutrition wise and surgical. Over recent years many new forms of medication have been found and a lot more is understood about this illness, its not the killer it once was if handled right.

WIN_20150816_12_25_43_Pro

This is me, I am 59 and have got very severe lung disease and a 21% lung capacity. I have gained 4 stone from stopping smoking and found out this week that I have managed to loose a whole stone which is great for me! Within the next 12 months I hope I am going to have some Zephyr Valves inserted to help me breath better. Follow me on my journey to improve myself, if you do you will be very welcome!

COMING TO TERMS WITH THIS ILLNESS

GRIEFOne of the worst parts of being given a diagnosis of COPD or any of the related lung diseases that come under this heading is the feeling of loss, it’s like a bereavement. And you seem to go through all of the stages of bereavement until acceptance comes and then you can get on with your new life.

You feel as if your life will never be the same again. I can remember crying, ‘I want my life back’, but it was too late. It wasn’t until I faced my demons and accepted what I had left that I could face the future and try to make the most of what I had left, which was considerably more than some people and less than many others. This illness relies very much on educating yourself and trying to stay as well as possible, trying to avoid lung infections being the top of the list. Also COPD can be very very scarey and causes anxiety problems. Try running around the room breathing through a straw – yes, I mean that – anyone who is reading this and has not got any lung damage please go ahead. Grab a straw and start walking about the house breathing in and out through that tiny straw. That is what it is like for us –

When my lung function dropped in 2010 I knew there was something not quite right. I had been in hospital in 2009 with Pneumonia but I did not have a diagnosis of COPD at that time, although I was very breathless. I was working then but finding it increasingly hard to do stairs and hills as previously mentioned but I was walking very long distances. I don’t know what my lung function was at this time.

In order to measure your lung function the hospital and most doctors have a machine called a spirometer (click for a video about ‘spirometry’) . The problem with these tests is relying on your performance on a particular hour of a certain day and also on your technique.. This can be confusing because if you have just had a chest infection your reading may be unreliable, your technique could be poor and in turn you will receive another unreliable result. However, they are the best indicators of your lung function and could catch many early cases if they were used more often. If I had had as many spirometry tests as I had peak flows with my asthma perhaps I wouldn’t be in the fix I am in now. But that’s another story!

SUPPORT AND EDUCATION ARE KEY TO A GOOD OUTCOME

inform-and-educateLack of support and education back then was huge, in the early days, you seemed to get left to your own devices and this is the time when you need this input, I didn’t understand the biology of this illness how to stop it in its tracks and how to make my life much easier. You often hear people say if I knew what I knew then – well this is one of those moments. I suppose in the back of my mind I was aware that my breathlessness was something to be worried about but you try to kid yourself and make excuses for being out of breath, such as age, weight and fitness levels.

Award Winning Life Coach, Gail Blanke, Wants People with COPD to know ‘Better Breathing is Possible’. A new online video series on YouTube features Gail and a COPD expert discussing the following:

  • Thinking Again About COPD shows COPD patients why they should take action to help manage their disease.
  • 5 Steps to Creating a COPD Action Plan outlines steps viewers can use today.
  • Expert Advice on Working Towards Better Breathing discusses specific lifestyle changes to help patients breathe better.  

Once I accepted that I did actually have this disease and it wasn’t going to go away, I decided that I had better find out more about it and if I could improve my life and improve my symptoms, this was 2012.

See all my other sections on the web site which cover breathing, exercise, weight, diet and new research for treating COPD.

Living with COPD

Endobronchial valves

Living with COPD

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s