MAKING LIFE EASIER AND TAKING CONTROL – 10 simple ways to improve your life!

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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. It was 2012 before I had worked this out! Can’t believe that was 4 years ago. And yes each year I have improved a little.

I started looking for help. My first port of call was the British Lung Foundation, I spoke to a nurse there, they have a help line that you can phone during the day and you can book an appointment to speak to a trained respiratory nurse. This was no easy task for me at that time, because I just didn’t know what was going on and I felt so blinking alone, I would say it is one of the worst periods of my life and if I can help just one person avoid going through something like this by writing my blog then I will be very happy. This is a link for them The British Lung Foundation

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Those three little words Knowledge is Power have never applied more with COPD or any life altering illness. A respiratory nurse rang me back talked to me and explained what was going on and to try to stop having the infections. She explained that it was the infections that caused the damage to the lungs. She suggested Manuka Honey and to have a teaspoon every day to help build up the immune system, (I have tried it but didn’t find it worked for me). Probiotics were also mentioned so I brought some of those too. She also told me about the British Lung Foundation forum and that I could have a text pal. This was the start of a great relationship with my friend Anne Henderson who also has COPD. Anne took me through a very dark time, and I have a lot to thank her for, she often mentions that period of time and says how ill I was and how much better I am now. Well, yes I am but I didn’t do it entirely on my own! Anne told me about the groups on facebook which I was not aware of at all and they were a great support to me at that time and still are.

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Social Media has played a large part in my recovery from those early days, depression is so common, having someone to talk to is very important. I was on facebook only last night at 2.15 in the morning chatting with some members because I was feeling awful, there is always someone to talk to, it is brilliant and best of all they actually WANT to talk to you and understand how you feel because they have it too. I read a piece in another blog where the lady said that she didn’t like the facebook groups because some people seemed needy etc. etc., well that is her opinion, in my opinion, I have learnt a lot of valuable information that I would not have under my belt today if I had not gone on the sites and I definitely would not be in the good position I am in now without them. With this illness knowledge is the key to a more productive and long life, I cannot emphasise this enough.

MORE ABOUT FACEBOOK GROUPS………

downloadThere are a lot of facebook groups out there for you to connect with the first one I joined was Breathing Buddies but I found they were USA based and their treatments were much different from the way we are treated in the UK. The next site I joined is COPD UK, this is a fantastic group and I have made many friends through this group. It was great for education and they have loads of files to read through, you can read lots the admin who are sufferers themselves of COPD work tirelessly putting up new posts showing information and new treatments. The problem is that a lot of people who have this illness have it in different forms and also have additional problems so you can’t compare yourself to them.  I am also a member of COPD Scotland, COPD – dying laughing, COPD a breath of fresh air, COPD Yorkshire and Mobility Scooter Club. My favourite at the moment is C.O.P.D, a Breath of Fresh Air AND COPD Yorkshire, the former has the most members  and from all over the world so there is always someone to talk to no matter what time you need a bit of company. And, this is very real you can feel very isolated with this illness (see, Loneliness and Isolation). On one site I saw a note about the above book which I looked into and have put a review on the post  – The 10-Step Program – does it work?

When I look back to 2012 I realise how much I have improved since then, I’ve stopped smoking, am on the right medication, have loads of friends to text when I am feeling low and high, and I do not feel so ALONE. That was one of the main things with this illness you can at times feel very isolated.

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THE KNOWLEDGE I HAVE GAINED

10 simple waysThe knowledge I have gained is very important and I have put it into practice in the following ways –

No 1 – I stopped smoking completely, this was essential so that I could move on and improve my life (see, My Stopping Smoking Saga).

No 2 – I looked at my nutrition and diet, obviously if I was short of any vitamins, this may cause problems and yes I was very short of Vitamin D. My doctor gave me supplements of this and it was nothing short of amazing the benefits that I received from this. I was also short of B12 and I make sure that I have my injections on time because this helps my immune system. There are lots of other vitamins that I have started to take Omega 3 (cod liver oil) all of the B vitamins are important too.

No3 – I had a thorough MOT done, I had a Heart Scan, Breathing Test and CAT Scan so that we could actually see what was going on. Something I found extremely hard to do as I prefer to stick my head in the sand sometimes.

No4 – I applied for all the benefits that I was entitled to and got a lovely new car! This really gave me a buzz and has been my saviour because I can now get around much easier and I hope to use it more as I further improve, I am hoping to visit friends that live away. It took a bit of getting but like my Dad used to say, ‘it is not worth having if it comes easy’. So I applied his saying at every wall that I came across, until eventually I had my money sorted out. This took me about a year! I have put a piece on the site about benefits (see All about benefits – Money).

No5 – I changed my environment at home. I did this by firstly admitting that I could not do all of my housework any more and realised that I did not have to sit in a tip every day, flyladywhich made me even more out of breath with all the dust  and depressed by the sight of it. So I employed a cleaner to help me. You don’t have to be afraid to say, I can’t do this anymore, its not a sign that you are giving in it’s a sign that you are actually accepting the hand you have been dealt and have decided to get on with it! As time as gone on I have needed my cleaner less and less and just use one mainly now for really heavy work.

No6 – I bought a Gas Stool. After reading a post on one of the sites it encouraged me to buy a bar stool. Mine goes up and down and has allowed me to do all sorts of  tasks in the kitchen I was no longer able to do because I couldnt stand for long enough. When I am having a bad day, I do everything on it from washing the pots to sorting the laundry, it’s my saviour. You have to keep going!

No7 – I asked for a downstairs Loo in March 2015. This has been a very long drawn out procedure, but I am not giving up! My life would be so much better with a downstairs toilet. (see my downstairs toilet saga). It is May 2016, now and I still haven’t got it, they have allowed it but the positioning of it is causing some problems.

No8 – Exercise, I have started doing exercise, at first I could just not equate doing exercise with improving my being out of breath. How could it possibly make things any better? I mean, I am out of breath constantly every day so how could doing even more exercise AND ON PURPOSE help me! WELL IT DOES!!! As your breathing rate and depth increases, your lungs absorb more oxygen, and yes, that means more oxygen-rich blood circulating through your body. At the moment I am doing a section about this called, Making the Most of Every Day. When I have completed it I am going to post a video on it of my collective attempts at exercise and how much better it has improved my life. Sort of a before and after thing which will hopefully encourage others to take up some form of exercise. See also Exercising and COPD – Come on lets do it together?

No9 – Diet, Oh dear me this is the one thing I know that I have to get to grips with and I amChzgRwnWUAEEfw- finding it very difficult, theres one thing stopping smoking and exercising but quite another giving up your favourite foods but I will get there, I have no doubt about that. In the meantime I can drink more water! It’s right there in its chemical makeup. Water is made of oxygen, so increasing your water consumption can increase the amount of oxygen in your blood. Start chugging. Oxygen-rich foods can naturally increase your blood oxygen levels. Stock up on green vegetables like kale, broccoli and celery in order to boost your oxygen levels and hopefully breathe easier.

No 10 – Steroids. Its very difficult for me to explain my relationship with steroids, they are 8078688_f260great when you need them and necessary for acute flare ups but I have been stuck with them more than once and not been able to come off them. Because of this, I have read quite a lot about prednisolone and, feel that only short courses are any good for me and I need to be very very ill before I will put one in my mouth ever again! Because of steroids, I have put loads of weight on, lost hair, obtained a buffalo hump and have the truncal obesity. I have also got cataracts which is not mentioned on the photo to the left. I have now had my cataract operated on and it is no more and I am getting my hair back and am so very happy about that and the lump on my back has gone. But I am still faced with a lot of weight to lose. This has all taken a year to achieve.

I ended up in hospital at the end of February last year, and my specialist said as soon as she saw me, ‘what have you been doing your massive, she was astounded by the way I was. I had blown up as if someone had plugged me into a bicycle pump.  I explained that I had
images (5) been given prednisolone by my GP and had been on them since the beginning of December. My specialist was furious and said, ‘they can’t just keep throwing steroids at you like this! They should have sent you to see me’. So, I was back on the social groups asking for advice and I got loads of help from them. It was another lesson that I was about to learn, GPs have very limited knowledge on how to treat COPD! Its not often I visit my GP now. Through experience and knowledge learnt from other people who have COPD and classes that I have attended at our local hospice, I am now more knowledgeable than the regular doctor on call regarding my illness and that will be the way it stays, I am afraid. I now feel in control and it’s a great feeling.images (11)

AND LAST BUT NOT LEAST I LEARNT TO SAY NO!! I familiarised myself with the Spoon Theory and I would not be without it and also Fly Lady. There are links there for both.

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MY APPOINTMENTS AT JIMMY’S

THE FIRST APPOINTMENT

THE BEXLEY WING

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The day before the appointment I went on Google Earth to familiarise myself of its location in Leeds and I am glad I did, it is a massive hospital. I did a few print outs and went through what I wanted to ask the specialist surgeon when I saw him. And said all my prayers for help that it would be a good outcome.

I had a poor nights sleep wondering and worrying what they were going to say to me at Jimmys. My own specialist is always talking doom and gloom and so is my GP, telling me how bad my X Rays are and breathing tests etc. However, I am wondering now if my specialist at Huddersfield saw a better picture when she saw my scan recently, because, after pulling me in for an extra appointment last month, she said that she wanted a chat in general about going ahead with the valves and that I really didn’t need to have the operation done. She said, ‘people live for years and years like you are’, (exactly I thought, I don’t want to live like this for years and years), this was a bit of an about turn to how she had been talking to me before! (sorry if I have previously mentioned this in another post). Well back to Leeds.

The journey to the hospital was very easy for me as my Daughter drove, bless her it was only the 2nd time she had driven on theimages (10) motorway and the first time she had driven in Leeds. Anyone who has driven in Leeds knows that the ring road is a nightmare and the first time I went to Leeds years ago I managed to do a few circuits of that before I reached my destination. I am not good with directions. But, now we have our built in Sat Nav I thought it would be easier for her. But noooo it wasn’t! Poor lass she only got stuck on the ring once on our way home and got really cross with the Sat Nav. When we arrived at the Hospital I was so glad that I have familiarised myself with its lay out because we would never have found our department as it was right around the back of the building. It was great because my daughter dropped me off outside the doors so that I didn’t have a lot of walking to do and she then parked the car up in the multistory, it saved me so much hassle.

The department that I was seen in was Surgical Outpatients and was located on the ground floor so it was very easy to find and they were running quite late so we had to wait for about an  hour to be seen.`1

When I saw the consultant surgeon at Jimmys he drew a picture of my lungs and showed me the bits that were not working and it wasn’t as much as I had previously been told! You can’t believe the relief that I felt I could have cried. It is actually just the very top parts of both sides the right side being worse than the left. He explained that the parts not working had developed multiple  bullae, which is –

an air pocket in the lung that is greater than one centimeter in diameter (across). Bullae tend to occur as a result of lung tissue destruction and diseases such as emphysema. Their presence in the lung takes up space, causes pressure and blocks your breathing.

I told the consultant surgeon that it felt as though I had a blockage in the top of my lungs when I tried to breath. I said it’s not like I am out of breath, I just can’t catch my breath and its a horrible feeling you panic. Its like being water boarded. He showed me the back of my lungs on the scan and said they were in fairly good condition. SO what is happening I would like to know and he then explained what was going on!

He listened to my lungs and said that a lot of good air was being taken in but very little pushed out. my lungs were running out of space because of these two top bits blowing up like a balloon and there is another couple of bits lower down but not that bad. So if everything goes to plan the situation can be corrected. I won’t get better overnight it will take time but there is a solution! He gave me two alternatives –

  1. Surgery – they can cut the top bits off my lungs so the other larger part can function correctly (don’t know about this)
  2. Insert valves that will empty the air out and not let any back in, in time these deflated balloons with shrink allowing my good lung to function, no surgery would be involved with this. However, it all relies on funding for this as its a very expensive process. It sounds better though, I don’t fancy being put under the knife but I would be open to suggestions from anyone who reads this post.

Before any decisions are taken I have to have a nuclear scan to test the actual function of my lungs they are not relying on my lung function test I had at Huddersfield, and I don’t blame them I am terrible at blowing into those things. To get a more accurate picture of my lung function the surgeon said the best way is with a nuclear scan and I will have it done within the next few weeks.

He said that they  tend not to operate until the good weather comes in so I shall be having my operation in the summer months, I would imagine some time after March!

I know a lot of people who will read this will think why is she so happy about having all this, bullae, operations and everything, what makes a person so happy to know all this!  Well the reason is, I thought I might be so bad that I wouldn’t be able to have any help and I would finish my life off like this, which is not a great quality of life, being out of breath every day. Its like you have to run a marathon every day of the week it makes you so tired.

Anyone who has severe COPD will understand how I am feeling, I have stopped smoking, done everything you are supposed to do, changed my diet (could do better with that) but, I have done as much as I can to help myself and had run out of options. I didn’t understand what was happening to me why was I getting worse when I had done all I had. Well it was them pesky bullae blowing up and stealing my breath, now I understand what is happening! He more or less finished the interview by saying that I had found them through my own volition  and they would do what they could to help me.

The Nuclear Scan (link to piece on the scan)

I will be having my scan during the next few weeks and I think the above video is quite good. It explains the process quite well and I will be glad when its over. Another Hurdle will then be over. What was it like?

CLICK HERE FOR SECOND APPOINTMENT

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.

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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

 

SOMETIMES I FEEL LIKE I AM ON THE OUTSIDE LOOKING IN!

IM NOT MOANING IM JUST FED UP!

Well Xmas is around the corner and as usual I have started with26284-are-you-living-or-are-you-watching-other-people-live_325x325_width another chest infection! This is really doing my head in this time, am so sick of being ill at Xmas.

So instead of feeling sorry for myself I am taking my antibiotics on time, which took a bit of getting, as I ordered them on Friday having just used my back up. After phoning them three times today I eventually received a message that the prescription was waiting for me. Well, I wasn’t going to go in as my breathing was too compromised but the prescription delivery service just managed to get them in time, thank goodness. So mission on, lets see how good I can get in a few days.

My trip to Scarborough was quite nice, I met my son and gave him his Xmas present which he loved, I got him a smart phone and he was completely delighted with it, so that was a hit. Its horrible buying unsuitable and useless presents so that made my day.

I also met my friend whom I love but was dismayed when she started04ed7-blogg going on about the cost of funerals and the importance of having a plan and a will which upset me a bit.  Why do people think that you are going to die with this illness all the time. As I have mentioned in some of my other posts we are more likely to die with it than of it. Well as long as you stop smoking and take all the good advice that can be found out there and manage your illness well, which I hope that I am doing, I should live for a good few years yet.

“It’s time to stop counseling patients who have quit smoking that COPD is a progressive and terminal disease. Many patients are under the impression that they are steadily dying of emphysema; unless it’s obvious that they are, physicians should re-educate them in light of the new findings in this and recent papers, which create space for optimism in the prognosis of COPD. Such a positive counseling approach might improve the mood, attitude and quality of life of people living with COPD (and — dare I hope? — help them increase their activity levels).”

(A quote from the British Lung Foundation)

COPD is not always progressive as this piece of research done proves. It is a study following over 2,000 patients of varying severity for 3 years.   COPD is not always progressive!

In addition to the plethora of articles on the subject, there is the living evidence staring us in the face – many people with copd for the past 20 or 30 years are still active in their 80’s.

Its making the most of your life, being positive and managing your illness. COPD is no different from any other chronic disease such as Heart Disease, Diabetes etc its up to you how well you are!

SO HEY HO AND A MERRY XMAS TO ALL

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NEW TREATMENTS FOR COPD – Cryotherapy AND PneumRx Coil System

Found this on another Blog site called Oxygen Worldwide and thought itimages (6) was very interesting so I am passing it on…..

BRONCHITIS is one of the diseases that falls under the COPD umbrella. It is where the main airways become inflamed and irritated leading to shortness of breath, mucus build-up and severe coughing. The new treatment being tested on patients with chronic bronchitis targets the thickened airway tissue by freezing it via a technique known as .understanding_bronchitis_basics_bronchitis

The theory behind it is that the cycle of freezing and thawing destroys the damaged tissue in the lungs allowing healthy cells to develop in its place and helps to repair the lungs and improve breathing. This has already been used to successfully treat oesophageal cancer.

A catheter is inserted into the airway and navigated to where the airways are thickened via an MRI scan and then liquid nitrogen at -200C is sprayed onto that section. The section of lung tissue is then allowed to naturally thaw for a few minutes and then the area is repeatedly blasted until the target tissue has been destroyed. The flash-freeze and slow thaw of the tissue has been shown to destroy the targeted cells but does not affect the collagen, which provides the scaffold for healthy tissue to regrow into.

This is currently being trialled in several British Hospitals and appears to be successful. The treatment can be adapted according top the patients needs and the number of treatments will depend upon the severity of their condition and how much tissue needs to be frozen. Hopefully these trials are the start of a journey towards a new successful treatment for COPD.

The medical potential is vast as it could mean that damaged tissue anywhere in the body could be treated by cryotherapy in the same way and allow new tissue growth to come through, thereby allowing aided self-healing of a huge number of conditions.

The RENEW Lung Volume Reduction Coils

Researchers at the University of Pittsburgh Medical Center (UPMC) is the first center in North America to enroll patients into an FDA approved clinical trial that will test whether the insertion of small coils can collapse the diseased lung areas and improve lung function, along with exercise tolerance among patients with advanced emphysema. The study aims to recruit 315 patients in 30 different U.S. and European centers.

The RENEW Lung Volume Reduction Coils provide a minimally invasive alternative to lung volume reduction surgery. European pulmonologists have been investigating the device for four years, but researchers at UPMC believe that only a large, randomized trial can medically prove the device’s effectiveness. The coils are small, elastic, shape-memory coils that are made of a metal that is commonly used in medical implants. Researchers implanted up to 10 coils in wire form into the lung of one patient. After deployment the wires recoil, pulling in the damaged lung area so that the remaining, healthy lung can inflate and deflate more effectively while improving airway function and breathing both at rest and during exercise.

The following video shows the theory of how and where they can be inserted –

Taken from the site Oxygen Worlwide

References: http://www.dailymail.co.uk

MY STOPPING SMOKING SAGA- If I can stop anyone can!

Go confidently in the direction of your dreams - Henry David ThoreanWhat can I say to persuade people with COPD to stop smoking because so many people carry on with the habit after diagnosis. I can understand why in some respects but if you had cancer would you stop? I think you would. Patients are under the impression and are misinformed that even if they stop smoking their condition will get worse. This is wrong!! Please read on for more information on quitting and see this link by the British Lung Foundation.

A few words about smoking with COPD. Smoking is a very addictive habit and it’s no joke stopping if you have psychologically relied on them for many years. You also have the physical addiction too, it’s not easy to stop. What makes it even harder is the fact that if your COPD is quite severe it becomes worse initially for some people when they give up the habit.

According to a report released by Am J Public Help, findings indicated that more than 100 of 599 documented cigarette additives have pharmacological actions that  mask symptoms and illnesses associated with smoking behaviors.The use of additives with additional or synergistic addictive potential, anesthetic properties, or bronchodilator effects. These common chemicals that give this bronchodilator effect mask some of the damage that has been done to your lungs and it’s not until you actually stop smoking and have to rely on life without this extra help that you really notice how bad things have really got, you really miss this bit of extra help!

a372d21cff6c3dd767170a477e6c5b5bThis happened to me you just have to go with it and persevere, in the end I can promise you it is well worth the misery. I tried all the help available, the patches, the spray, the lozenges and the inhalater. I made a right meal out of my quit and used every available help even hypnosis. My friends used to say, ‘If you can give up, anyone can’. I wasn’t a 40 or 60 a day smoker. I was a binge smoker. I would do all my housework and promise myself a nice cig and a coffee when I had finished. And it would be 2 or 3 cigs and 2 cups of coffee. I used to go through about 20 a day at my worst. I couldn’t afford any more. Below Leonard Nimoy talks about his life and COPD.

In order to give yourself the best chance of a successful quit I found that I had to plan in advance, tell my family and go to the Doctors for help. I tried loads of nicotine replacement therapies. I found the nicotine replacements all very different, the spray made me as sick as a dog and I only used that one once, the mint lozenges were quite good but I was going through so many that made me sick as well and the chewing gum made my jaws ache I was chewing that blinking much and looked like a hamster. In the end I opted for the patches and the inhalater at the same time which I found a great combination. I used the NHS Quit Line also, which was very good and sent me lots of neat little bits and pieces to help me along. Such as a large poster to chart my progress. The following is also helpful video which advises you on food to eat to help your quit.

I found it was better to quit when you are not in hospital,  as I mentioned before things get worse at first and if you are already high with an infection, things get a lot worse and I experienced this twice, the last time I vowed I would never touch another cigarette and I didn’t. So before you get so ill you end up in hospital, please stop, its no joke stopping in there.

Stopping smoking is the single most important piece of advice anyone can be given when they are diagnosed with COPD, as this quote from Patient UK explains.

If you stop smoking in the early stages of COPD it will make a huge difference. Damage already done to your airways cannot be reversed. However, stopping smoking prevents the disease from worsening. It is never too late to stop smoking, at any stage of the disease. Even if you have fairly advanced COPD, you are likely to benefit and prevent further progression of the disease.

Your cough may get worse for a while when you give up smoking. This often happens as the lining of the airways ‘comes back to life’. Resist the temptation to start smoking again to ease the cough. An increase in cough after you stop smoking usually settles in a few weeks.

The National Health Service (NHS) provides free help and advice for people having difficulty in stopping smoking. Medication, such as varenicline and bupropion, and nicotine replacement therapy  (such as patches and chewing gum) can be prescribed, and counselling offered. You could see your GP or practice nurse for further advice, or visit the NHS Smokefree website

In the end you know yourself that you have to stop smoking or die because that is the raw truth with this illness, COPD and smoking do not mix and the progress of the illness is very fast if you don’t call it a day. Not to stop smoking when you have COPD is mind-numbingly stupid, but, if that’s the way you feel, go on that suicide mission. Think of it as Darwinism in action. This advert says it all ……………………………….

And hey I wasn’t going to pay the government to kill me through all the tax they obtain from these poor smokers (but more facts on that later), nor was I on a suicide mission! So this is how I did it.

This is my stopping smoking story –

26490a6e04557d841952b7cdcda924faIn 2006, I managed to stop smoking for over a year, 18 months in fact, I felt brilliant after the first few weeks, up until then I felt like I was loosing my mind. I can remember driving home from a friends house one Sunday, she lived in Sheffield and we had been to some art exhibition and I sat in the car crying all the way home. I was finding things THAT difficult its no exaggeration! All I did was think of cigs all the time and I missed smoking like mad, I just felt totally deprived. I felt my best friend had deserted me and could not carry on without them. Every problem I have ever had was shared over a cup of tea and a cigarette, they had got me through so much. And now I was going to put weight on too! As it turns out they were not my best friend they were actually my worst enemy. Shame I couldn’t realise it at the time. I new I had to stop smoking, I was like a kid having his dummy taken away. Whenever I went to the doctors they used to ask me how I was getting on and I used to say, ‘I haven’t had any cigs and they used to say very good. then I would always reply, ‘I have no choice in the matter have I’. I was not often joyous about the fact I had quit, thinking it only a penance for getting this horrible chest I had. ‘You’ve got a bad chest so we are taking your toys away, sort of attitude’.

On the 25th March, I went out for a family meal to celebrate my daughter’s birthday and what a day that was. I felt so sorry for my daughter. Her 18th Birthday and I was just out of hospital and so was her brother. He had just undergone a brain operation to seal parts of the brain as he had spinal fluid leaking through which can cause meningitis. So her birthday was totally ruined really, but she was so stoic about it all. I had stopped whilst I was in hospital on the 13th March. I felt terrible and I decided there and then that I had to buy a journal to write down my progress. I knew this would give me a better chance of succeeding. I needed to for my family, for my daughter! I wouldn’t have been in hospital this time if I had stopped smoking before, I knew it was my own fault!

I wrote in that journal for weeks and it helped keep me on track and encouraged me to keep going when I looked back on my entries. I also bought a book, a very important book in fact, without which I don’t think I would have succeeded, my friend says it brain washes you. It was called,  Allen Carr’s Easy Way to Stop Smoking, seems ironic now as Allen Carr died of lung cancer in the end, but anyway it worked! I read the book from front to end and I didn’t start smoking again for almost a year and a half! This is an excerpt from my journal –

Today is Elise’s 18th birthday I am not smoking and I am on day 13 of my quit. This cig thing is terrible I felt like one desperately this evening but week 3 starts tomorrow and things WILL get easier from now on. Stopping smoking has taken over my life at the moment. I know i will feel so much better once I have cracked it. I have so much to gain staying with it and nothing to lose!

and on day 15 –

This has been an even worse day – went to the doctors and my chest is improving but the no smoking thing is at its height I think. It has been a long day today as I was up quite early. Tonight things have seemed a bit better and for the first time in ages I feel a if I have got some energy and I don’t feel so depressed. The craving is still there but not as bad, lets see when tomorrow brings

Taking things a day at a time was one thing I found made things much easier to handle. One entry I made in my journal was –

The reason it is so hard to stop smoking is FEAR!! of giving up a lifetime without cigs! I suffer from the ‘smokers itch’, the belief that smoking supplies support to your life is an illusion! I have been stopped smoking now for a month, what is it like one month on? A lot easier in some ways but I still crave a cig and could go to the shop for one now! But I stick my inhalater in my mouth and hope this feeling goes away at the end of this second month. That I will feel like a non-smoker. I don’t get bad tempered any more or suffer from the thick head and the terrible neck ache I had, these are now gone.

By the beginning of 2007 I had put on almost 2 stone from stopping smoking and my breathing was badly affected by this weight gain, (see the section about Tummy Fat and Breathing), my emotions were all over the place too as I had gone on the dreaded change of life, the menopause some people refer to it as. And, I had developed an underactive thyroid for some reason.

9e3614a4eddcea3763628274a5ddcb32In September 2006, I had changed my job and it was one of the worst moves I have ever made in my life. I think I have already spoken about it in my section about working with COPD. The department I moved to was terrible,  the deputy manager in the department was a real harridan and she seemed to have sucked most of the staff in so badly that many of them were acting as she was. I think they were just afraid of her to be honest and were just content in looking after their own backs. The ones who were more honest either left or were also made ill by her. By July 2007, I was smoking again!

I would say, the next five years at work were the worst of my life. She totally wore me downimages (8) the thing that surprises me the most is how she managed to get away with it! If my time in that department had not been hounded by my increasingly bad chest and the deaths of close members of my family, one who was my son and the, ‘you look after your back and I’ll look after mine’, attitude of the staff at work. I think I could have put up a good fight and put her in her place, but instead, after my July review at work, I was in buckets of tears and went and bought a packet of cigarettes. That seemed very much the pattern in that job and looking back I wonder why I had never left sooner. But well paid jobs are hard to come by and I loved my actual job, I managed to go through a few years just teaching, doing what I loved and not really mixing with the staff, (well, I will talk a bit more about this later).

It is very important that you are mentally ready to quit smoking, as this process is not an easy thing for some of us to do and you need to be 100% behind your decision and totally committed. I can’t remember ever thinking through those early years of quitting that I really wanted to! I know I had to for my health but wanting to and having to are two very different states of mind. And as I already said, you need to be in a good state of mind to quit.

Pity I started again, but one problem we addicts have is thinking that we can just have one, one cig and then I won’t have any more, which turns into one pack and then before you know it you are smoking again, I certainly won’t fall for that one again!

The law of physiological addiction states that, “administration of a drug to an addict will cause reestablishment of the dependence on that substance”. This means, by taking a puff, the smoker either goes back to full-fledged smoking or goes through the withdrawal process associated with quitting.  Most don’t opt for the withdrawal. Don’t look for loopholes in the law of addiction.  You will be convicting yourself back to smoking.  While it may seem harsh and unfair, to many, smoking is a crime punishable by death.  Don’t try to cheat the system – NEVER TAKE ANOTHER PUFF!

I actually did quite well because I never got back to smoking a pack a day again and I managed quite a few good quit attempts before I FINALLY managed to stop completely YAY!! I have at the moment been a non smoker for almost 3 years and I can promise you I will never ever smoke again it stinks, honestly that is how I feel now but it wasn’t always that easy.

live-life-in-colorFrom mid 2007 to 2012, I was on and off that blinking wagon more times than I can remember, those wheels just would not stay on for long enough and kept repeatedly falling off. I tried Champix and all manner of nicotine substitutes. I even started a blog called  “Too stressed to stop smoking” and joined a nicotine busters site. I really made a right meal out of stopping smoking and made it much harder than it actually is.

Here is an extract of my effort to stop in 2010 –

Today is day 22 of my quit this time! And I know it will be my last quit because I have finally cracked what motivates my need of this very dangerous and smelly habit. Shame I could not have found this out years ago. That does not mean to say that it has been a piece of cake to quit this time, I just understand myself and the addiction more, that’s all.


I stopped smoking, for the first time, in 1999 when I was in hospital with pneumonia. After 14 days in hospital and chewing umpteen bits of nicotine chewing gum and resembling something like my sons gerbil, I went home and started smoking again. Crazy or what? I just could not get around the smoking thing and why I was smoking never really entered my head!


I tried to hide the fact from everyone that I had started again even swearing the woman in the corner shop to secrecy (how pathetic us addicts are). It was during a cig break in our outside toilet that my son and his friends saw me through the opaque window dragging furiously on my secret fag. The game was up!My son had found out and immediately went around the neighbourhood telling everyone his mum had failed and broken her promise. He was 10 years old then and not a smoker obviously at that age. He is now though and I wonder how much my previous attitude to cigs and stopping influenced him to take up this horrible habit.


Well that is part one of my blog and I will continue with my smoking/nonsmoking story as I get chance to put key to blog.

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When I read this over I feel so sad that I did not know the real importance of stopping smoking with this illness, it’s no joke, nothing to play with it’s your LIFE!

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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.

At that time I was still working and walking around with little problem, just finding it a bit hard climbing stairs and doing anything strenuous. And at this time, most importantly, I didn’t realise how bad this disease can get, how debilitating and how much it can interfere with your life in every way.

Even videos like this didn’t really sink in as I hope they will for any smoking reader who views this page. I used to turn the television over when I saw adverts like this. Does this ring a bell?

SO THOSE WHEELS KEPT GOING ON AND COMING OFF

1622844_1458995784320018_1595455121_nBy 2010, I was only smoking part time  but because I was on one quit after another I was constantly stressed out. I have learnt since that its harder to smoke part time than to just give up. Unfortunately, I ended up with Pneumonia and being taken into hospital for the first time in years. It all really pushed me over the edge. Of course, I stopped completely again, but just couldnt keep off them completely when the day after my release, I was told my son had died (but that’s another story). Now, I could handle it all and not start again, it’s not something I am really bothered about any more and I think it was the Hypnotist that did that, it was well worth the £150 I paid.

Sometimes, you have to give yourself additional reasons to stop smoking. One fantastic thing that had been happening over the last year or so which had really helped with all the upset and grief in my life at that time, was the arrival of my first Grandchild, she was a wonderful distraction. Such a happy little madam and the light of my life and then one became five, when my daughter produced twins and not long after another boy. And my son produced a brother for his daughter. But, as families are, problems arose which you have to deal with and I found it difficult to deal with problems without my cigarettes at the time. I was totally convinced that I would fall to pieces without them. Which is utter rubbish of course. So I read my journal and the book again!

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By 2012, I had five grandchildren and even more reasons to stop smoking permanently and get my life in order. If they weren’t worth the struggle then what was? And my daughter needed my help too her twins were so hard for her to look after, she was as total stress head at the time. Another thing that added a plus to my quit was the money, I was so much better off not smoking and also it annoyed me how much the government benefited from my poor health and empty bank account, see the following link for more information on, how the government benefits.

I had been through so much over the past few years it started with my Dad dying, then my Son and then my Mum all in the space of 19 months and then work slapped a disciplinary on me for swearing about the harridan when I was stressed. My youngest son was also going through loads of problems with his partner and was on countless suicide missions, my life at this time was very difficult. I ended up having to give up my job because the thought of going into work after I had been given this disciplinary gave me panic attacks. I felt like I was drowning and it was so hard to keep off the cigarettes.

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In March 2012, I had a massive asthma attack and ended up in Hospital for 3 weeks. I had never been so ill and I was gasping for breath for days, they prepped me for ICU but fortunately I didn’t need to go in the end and ended up on the High Dependency Ward, I was so scared. It was an experience I never wanted to repeat and touch wood never have since. This extended stay in hospital really made me realise how bad things were getting and I prayed to God that I would never ever smoke again if he got me through this. images (9)I was desperate and I have never touched another cigarette since. Do I believe in a higher power who turned my life right round, yes I definitely do, you can call me all manner of crackpots if you like but my fight with cigs ended after that stay.

The first two years of my stopping smoking were not easy health wise. You have to remember that you have smoked for years and any benefits you receive from stopping  is not just going to happen overnight. In fact for me I got worse to start with which was very frustrating and after about a year I did start to feel a bit better and after two years I seemed to turn around.  My own doctor said that if I had not stopped smoking I would have been dead by now and I can believe it. Some of us are just not meant to smoke, as previously stated for some of us this smoke is so toxic it can kill us. It doesn’t make you feel any better when it is reported that only 20% (statistics are a bit wooly about this some state its nearer 50%, because of underdiagnosis) of people who smoke end up like myself, the ‘why me’ button is then pressed, but I expect people with cancer and any other life altering illness think the same.

I have now made sure my condition doesn’t get any worse, in fact the deterioration of my lungs will be no worse now than a never smoker, so it makes me feel very good. However, I should have stopped a long time ago when I was not so ill. The fact that I have put on a lot of weight from stopping smoking does not help me to see fully the improvement from stopping smoking. I will keep you posted on that one! I have also secured a chance of improvement by being a good candidate for the Zephyr Valves, something I would never have had the opportunity to do if I had continued smoking.

Remember when you read this that it is worthwhile stopping smoking and that when you do stop you may feel worse at first, just go with it and enjoy each day as it comes as you clear your lungs of the crap you have collected over the years. You will feel better eventually I promise!

Please let me know if any of this has helped you and if there is anything else I could include in this section.