IS COPD TERMINAL – AM I GOING TO DIE?

images (3)During one of my hospitalisations with my Asthma the news was broken to me that I could have developed COPD (this was confirmed at a much later date), I will NEVER forget the feeling, when they handed me a leaflet on Emphysema and COPD and just left me to deal with the news alone. I spent all night in the bathroom looking out of the window and crying. I just couldn’t handle it at that time. I said ‘will I die from this?’ and the nurse said, ‘we all have to die of something’, that definitely wasn’t what I wanted to hear at that time.

My Grandad had died of emphysema, I hadn’t been very close to him unfortunately so did not know what he went through with it or how he managed it but I knew it was terrible, whatever it was and I was basically frightened of the unknown.
The truth is, how long you live once you have been diagnosed is up to you. Your life and how long you survive once diagnosed is literally in your own hands. How long you survive will depend on your actions because although COPD is progressive that progress, providing you do not smoke, is very slow. 
 
The following piece has been written by Derek Cummings who has lived with the disease for 28 years and I really wish I could have read this when I was told I MIGHT have it.  The way you react when first told you have this illness needs to be positive, you need to know that you are not going to die and how you can make your life better, also what you can do to improve your life and slow the disease down – I so wish I had known this. I was like many people at first, I just felt that this was it the end of my life, what was the point of doing anything, I was depressed basically and scared! Below is this piece and some links have been kept in for your further reading.

knowledge_is_power_by_haleyspeers-d4nqjj7As someone who has written a journal on my journey with COPD for several years I often receive emails from frightened readers. Or notice a search engine query asking if COPD is a death sentence or how long do I have to live with COPD? “Will I live long enough to see my children grow up? Does this mean I will not see my daughter grow up, get married, start her own family? Or ever know my future grandchildren?” are often the first questions I read in emails I receive.

Many times this is followed by a Google session as the frightened patient types “how long do I have to live with COPD?”. To then receive some good, but sometimes frightening advice. One page I know informs the reader you will live five years at most from diagnosis. How wrong is that? I have suffered COPD for 28 years now. I have friends on my COPD network that have lived with this illness for longer than I. If that advice had been right, I would have been dust by 1992.

None of us will beat the reaper. We are all sadly going to die at some time in the future. But more than likely with COPD and not because of it, despite COPD being one of the major causes of death in both the USA and UK. I am not going to lie, COPD will finish some of us. But most will have managed their condition for very many years, with lots of fun-packed times put in before the inevitable happens.

The truth is how long you live once you have been diagnosed is up to you. Your life and how long you survive once diagnosed is literally in your own hands. How long you survive will depend on your actions because although COPD is progressive that progress, providing you do not smoke, is very slow. Just simple lifestyle changes can and will add years to your life. As your illness progresses through the stages there is no denying there will be many challenges, and if you reach stage 4, there might come a time when you need to use oxygen therapy. But the truth is you are much more likely to die of something other than COPD.

Terminal to me is having cancer and being told you have weeks or months to live. That is the time to do all the things you have been scared to do. A parachute or bungee jump for instance. Can you imagine me jumping out a plane with an 8 pounds oxygen cylinder on my back? I guess my jump will speed up a bit but have to admit to laughing when I think about it. Our job with COPD is to make sure the reaper waits as long as possible. To do that, all you need to do is manage your condition. Take your medications when you need them. Oxygen if prescribed. Do not smoke. Else you might not last five years. Quitting smoking slows the pace of COPD dramatically. Exercise as much as you are able. This will exercise the lungs and help to keep muscles toned. Muscle uses least oxygen. Try not to get stressed as stress causes lots of breathing problems. Try to stay positive and to keep positive people around you. Have ‘It’s good to laugh’, as your motto and laugh often. Ask your consultant for a COPD management plan and stick to it. Make sure you get a flu shot each year and pneumonia shot. If you become unusually breathless seek medical attention as soon as you can. If you do that, like me, you can live for very many years. In two years I have an anniversary. It will then be 30 years I will have lived with COPD – yet despite stage four I am still enjoying life.

Two years ago I learned of the death of a 66-year-old man from COPD. It was with sadness I read the reason. Despite having been prescribed oxygen, a false pride meant he would not use it. To him it was seen as a weakness to be seen using oxygen. Sadly his heart gave out under the strain of trying to give his body theoxygen he needed, and he died.

If you are prescribed oxygen it is to protect your vital organs including your heart. Oxygen when needed helps us to feel well and to breathe easier. I use oxygen for mobility and have no such false pride. Sometimes people look but everyone is polite and helpful. During the three years I have used oxygen not one has been rude. It is equally sad that many that do have mobile oxygen do not venture out their homes, in fear of what others might say. My thoughts have always been if someone has a problem with my cannula that is their problem. Not mine.

I hope this short piece has helped allay some of your fears of COPD, leaving you more able to start to feel less stressed and more able to move forward. Till I write again, keep that smile. But most of all, Breathe Easy.

I was diagnosed with mild COPD in 1987 when 39 years of age. Now at the very severe stage, I use oxygen for mobility and am disabled by my illness. Despite this I still have an extremely active life, and after more than 27 years of living with bad lungs, am living proof that we with COPD can enjoy a long life. I am often seen at events, meetings, restaurants, and publicity events though I wear a ‘nose hose’ for oxygen when mobile and a mobility scooter to get around.

See Also  How long will I live Another Wonderful Piece

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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.

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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

 

LONELINESS AND ISOLATION – A VERY REAL PROBLEM

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Great Britain is supposed to be the loneliness capital of the world, loneliness is a killer, a silent killer. Surprisingly it can affect young people as much as old, its just not synonymous with the aging population any longer. Young people find it hard to get out and meet other young people as they used to do years ago. They move away for work and college and find it difficult to connect with people in a new city. So loneliness is now ageless!

Loneliness is the Leprosy of the Modern World (Mother Teresa)

the biggest disease

LONELINESS is such a real problem in this modern world of ours. Families split up, live abroad or move miles away for work, leaving older people who don’t have the mobility they once had stranded and alone in their own homes.  Quite often they have lost a partner whom they have spent years with to illness and old friends become distant, suffering from the same problem of not being able to get about.

It is the world that we now live in and the people we have become that is causing this problem.Winston Churchill used to call depression his ‘Black Dog’, I  would like to refer to this loneliness as the ‘Blue Dog’ and there are no medications to help with this one. It is inexplicably linked to our modern and fast way of living which does not take into account some members of the population. They get left behind in the rush of others trying to live, sometimes selfishly, other times just from having too much to do, in the pursuit of wanting too much or too many possessions. Other people just get left behind in this rush of living. Life does not come to you these days you have to go out there and join in. There is of course the internet and social media but for a huge part of our population this is still lost on them, they don’t have the skills. Times like holidays such as  Christmas highlights this problem even more as a quote from the Mail online shows –

Beleaguered A&E departments face being overwhelmed at Christmas by lonely, elderly people, Britain’s most senior casualty doctor said last night.

The warning from Professor Keith Willett came as Care Minister, ‘ Norman Lamb’ urged Britons to care for isolated neighbours to prevent the UK becoming a ‘neglectful society’. (Taken from The Mail Online)

lonelinessWas Normal Lamb right? Yes, I think he is absolutely right, I know only a few people that I would call real Christians. But let’s face it, you don’t have to be a Christian to be a decent and caring individual and there is a shortage of these types of people in our society today. Even some of these die hard church goers could be termed less than caring in my experience. Just because you go to church doesn’t guarantee you a place in heaven, as my Grandmother used to say regularly. And its got nothing to do with our aging society, it is all down to people becoming too self absorbed in my opinion, but that’s just me. But lets look at another segment of our population that really suffer from friendlessness and the Blue Dog and that is people with a Chronic Illness.

In time of prosperity friends will be plenty; In time of adversity not one in twenty ~
English proverb
Where are all my Friends Now?
051677755e2d7a578874d0ac41c4ac636b3efc-wmChronic illness throws a spanner into the works where our  relationships are concerned. We may seem as foreign to the people who love us as if we had begun speaking a different language. Our family and friends still want us as the friend who worked, laughed and went to the pub with them. The Mum  or Dad who had a mountain of energy and could always be relied on to help at the drop of a hat. In turn we want them to treat us just as they used to but for some reason they seem to disappear as quickly as snow on a warm day. I have spent a lot of time educating my immediate family about my illness, it is still difficult for them to accept at times. My friends have been harder to educate and I think sometimes it is preferable to just ignore me altogether than to accept this new disabled version of their old friend. But that’s not good for me it leaves me and my blue dog. As Susan Milstrey Wells states in her book –

“Ultimately, as we strike a delicate balance between our own needs and the demands of our most important relationships, we grow in self-awareness, creativity, and acceptance. We can’t be sick successfully without learning to love ourselves, and when we accept our own limitations, we’re much more likely to let those around us be less than perfect too.”

But, it upsets me when I think of all the friends I used to have who now never come to see me anymore, what other reasons could there be for this. Yes, they are maybe very busy with their own lives, maybe they have replaced you in their friends network with a more active friend. However, not everyone is so brutal, the following are some reasons that your friends might have neglected to call on you –

Fear of Death – Pardon my French but hearing that a friend has been diagnosed with a serious illness can scare the crap out of people.  It forces them to confront their own mortality and acknowledge that we’re not in total control of our destiny.
Fear For Us – The irony is that some people love us so much that they are scared for us…too scared to stay.  They can’t stand seeing a loved one in pain or watching that person die if he/she doesn’t make it.
Fake Friends – Some “friends” were never true friends—many of those relationships were one-sided.   You’ve often heard the saying that, “you soon find out who your friends are in a crisis!” That being said, it’s also important not to make hasty judgments.  Judge a friendship over time—not one moment in time.
Dunbar’s Number –  According to anthropologist Robin Dunbar, our brains can only handle 148 meaningful relationships at one time.  (Having 1,500 Facebook friends ≠ 1,500 meaningful relationships.)  Have you ever had a moment when you ran into an old friend and reconnected instantly?  It made you wonder how you ever lost touch; it’s possible that your friend had his/her own dragons to slay while you were fighting illness.   This is a complication that accompanies life, changing events like becoming sick, getting married, or having a child interfere with your connections.

The following quote from an MS sufferer it is so sad –

I wish I could say that I am one of the disabled people that you see that is so outgoing and go out and enjoy life with friends. It is only a dream for me. I have ms, I am not to the point that I can not walk, but it is getting worse all the time. I do not have the strength to go out for very long periods of time so I stay home the majority of the time. I live alone, I do have my cat to keep me company, and I love him so much but I just wish I had someone to talk to.

Loneliness was acted out very well in Bridget Jones Diary –

Divided couple

People are single for longer, they don’t trust anyone as they used to do and the partner for life model has totally gone. Even internet dating has its limitations and divorce is just part of our lives now and someone always gets left behind.

A disability charity has found that a quarter of disabled people feel lonely on a typical day

“This past year has been the loneliest of my life,” says Ian Treherne from Southend in Essex. The 36-year-old has had a hearing impairment his whole life but has been losing his eyesight recently due to retinitis pigmentosa. He says he now finds it difficult to sustain friendships.

“I lost my driving licence and I’m single, so I don’t have a girlfriend who can support me,” he says. His sight loss has left him with less confidence moving around Southend by himself and he feels “reclusive” and “cut off” as a result.

Sense have released a report called We All Need Friends” (click to read this). See the following video –

It calls for a national debate around the issue of loneliness for disabled people and wants local authorities to employ more services that ensure disabled people are given accessible opportunities to make friends.

Alternatively for our elderly population, Silverline is a charity set up to help the lonely and the following video explains what they are trying to achieve –

As soon as my health is improved I will be giving a few hours to help. It will be a way of giving something back for the help I have received, cant wait to help.

The Charity Campaign to End Loneliness (click to see), state that over 1 million people are living in acute loneliness and that is very easy to believe when you have spoken to elderly people who attend the rehabilitation classes that I often attend and also the Hospice. I have a few phone numbers that I picked up from people but its very difficult trying to help when you are ill yourself.