Interesting scientific results with lots learned.

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I was a little surprised to notice my last blog was written in August. Illness has not stopped me. The only reason being enjoying good weather and photography. I would be less than honest if I were to say that things were no harder than they were a year ago. COPD is progressive, and I do get a little more breathless than I used to. I do have to move slower at times. But as I often say. It is essential we keep moving.

A part of winter I really dislike is the coldest two or three months. The months when in the past I have often been housebound. Too cold,wet,windy, high humidity with lots of dampness in abundance during winter kicks me like a mule, leaving the only answer to stay home in the warm and dry. For that reason, I have ramped up my volunteer work. For some time I have worked with the British Lung Foundation, Wales. But have now extended into our local health board, and scientific studies paid for by the Welsh Government. The advantage is I get to go to meetings in a warm building. While meeting interesting people helping to ‘make a difference’ in our lives. I enjoy doing this as it give me a sense of purpose. Motivation to ‘move my body’. And I can see the results of the work I do.

This last week at a meeting we were told, I was part of a group of people, all with copd, have made medical history in Wales. The meeting was to show the results of scientific test I and others had agreed to be subjected to.

The tests was to check the difference in Arterial stiffness and Cardiovascular risk between copd patients, and those with good lung health. The non invasive procedures were amazing as was the equipment used. The most up to date in the word to test blood pressure in the heart. How long it takes for blood to move from one point to another. Bone density. Lung function. The heart. Aorta and arterial stiffness The tests were many. But non strenuous or taxing.

I learned the body is not made to last over 100 years. Better forget that immortality bit. Given enough time your arteries calcify into something almost as hard as bone. Blood pressure rises with age because of the hardening of the arteries and the aorta. I learned that most people over the age of 50 years have blood pressure higher than younger because of stiffening arteries and many will be classed as hypertensive at that stage. To top that your aorta and heart would wear out eventually anyway. The message is. Sorry but we are all dying. Who wants to live forever anyway. :)

A subject not often talked about is dying. In western society it seems to be something hidden away, as though it never happens. Death has never worried me. I cannot stop it. I am going to die. Although I would like to delay it by a few years. What most want is to live a long life. But not get so old we are infirm. Am I right?

COPD is an inflammatory disease. That is why you are given steroids sometimes. To get rid of some of that bad inflammation during an exacerbation. Some of the problem is that during a flare up the Aorta and arteries also become inflamed. And when that happens the part that was inflamed in the Aorta or arteries will calcify more. It is a slow process but is happening. As you get older your bones soften but your arteries harden. All pretty amazing stuff.

A treatment to help stop some of the extra calcifying us with copd have will be available hopefully soon. The good news is the drugs are already available as the same ones are prescribed for other illnesses. A raised heart beat, which most of us if left untreated with copd will have, when lowered, lessens the calcifying process. Watch this space. I will know when it becomes available generally for us copd patients.

Interestingly tests were taken on those with arterial hardening before and after pulmonary rehabilitation. And it was found that aortic and arterial stiffness improved with regular exercise, and blood pressure lowered at the same time. Proof that if you don’t get any exercise you are more at risk than someone that does. These results mean I will be moving my body more and be ready to huff and to puff more. Getting out of breath is not dangerous as long as your oxygen saturation is ok. If you have an oximeter keep a check to make sure you have a saturation of 90% or above at least. The end game will be we will live longer while having better tolerance to exercise. One piece of bad news is if you smoke your arteries calcify faster. Making smoking and copd end game stuff. Bet you are saying thank god I quit.

I will try to write another at least once a month. Many thanks for the many emails received from you guys over the last few months. I always appreciate them. Take care. Keep that smile. And don’t forget. Exercise is good. As is laughing. Till my next blog. Breathe easy.

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An active life despite having copd and using oxygen thanks to the NHS.

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Today it was brought to my attention that I have used oxygen for mobility for over two years. The years seem to pass so fast as we get older. Almost like being on a magic roundabout that speeds up for every year we live. The truth is though without our British National Health Service. For all it’s faults. I would most likely be dead.

The NHS has provided drugs to enable me to lead as normal a life as possible. And oxygen to allow me to go about my normal business. Without which quite simply I would not lead any kind of life. It is because of the NHS that I can attend meeting on our health board, help the British Lung Foundation with publicity. To do a multitude of tasks I would otherwise not be able to do. At present I am also looking forward to getting involved in research from a patients point of view as part of NHS studies. Quite simply I don’t want to do nothing with my life. I want to as long as possible put back into the system.

By doing volunteer work and being involved in board meetings and other activities I keep my brain active, myself to a degree active also even though I use red most times. When I started to use oxygen I was surprised by the response of most people. I found I was accepted with a cannula by most almost without question. As if wearing one is a normal part of life. It is for me of course but it appeared most did not even notice the cannula. If asked I explain I have emphysema. And that I have low altitude sickness. If asked by children I point to the cannula and explain it is my mustache. Both always raise a smile.

I would be excused for assuming that as far as a professional life that had passed due to being ‘on oxygen’. And this is where I was even more pleased and amazed. I have been invited to meet celebrities, interviewed on television and radio. Am on a health board, been accepted to join research, help run a breathe easy group along with other activities. All while wearing a cannula. The fact that I use oxygen for mobility. And sometimes even ride into a boardroom on red, does not in any way affect what I do. Isn’t that wonderful. I lead a full life. With oxygen for mobility. And it does not effect me professionally or otherwise. It could be said I consider myself to be an ambassador for those of us that use 02. Showing that to wear a cannula is acceptable and people in all walks of life will treat you with respect using oxygen or not.

But back to the purpose of today’s blog. Without the NHS not a bit of what I do would be possible. I simply would be dead, or too ill to do anything but sit in my home. And possibly lie in my bed. This Tory government here in the UK is trying to kill the NHS by the backdoor. You only have to ask concerned staff on the front-line who have seen what is happening. Do not let this happen. You must make sure everyone that is concerned is aware of what the future may hold should we lose this essential service to life and death in our country. I am not normally this political. But in the case of the NHS feel I have to make a stand. Support your NHS. Protest against cuts. And show any government, of any persuasion, the door should they want to damage our NHS service.

Some have noticed I have not blogged so much this last year. Please be assured it is not because of illness but because my days have been so very filled with the work I do, while in between I have been out during the summer months enjoying my other passion. Photography. I have also put a page together to show some of my photography. This is still in the making although if you would like to view it please visit my site by clicking this link.

Till my next blog remember there is always someone worse off than you and that a smile is contagious. Give a stranger a smile today and watch how many you get back in return. And most of all. Breathe Easy :)

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Newly diagnosed copd, the stages, and do’s and don’t.

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My one regret is that even in this day and age not enough information is given to newly diagnosed COPD patients. That despite constant campaigning to doctors in particular to guide patents to somewhere they can get full informed information on their illness this is not happening. Made all the more obvious by the average two emails a week I receive via this blog from those recently diagnosed. Left frightened for their life. In some case believing that now is the time to make those last arrangements.

If you are recently diagnosed welcome to my blog. It is here you will learn about copd as it is. From me, a patient that has suffered from copd since 1987. As it is now 2014 I have done a lot of living since. And there is nothing different from my emphysema than anyone else’s. First recognise there are four stages of copd. In some countries it is called gold standard. But I will make it simple.

Most times a person learns they have copd when visiting their doctor because of shortness of breath on walking, bending perhaps. Maybe dressing. Or maybe because you had repeated infections of chronic bronchitis or some other symptom. Maybe as a smoker you coughed a bit. Passing it off as smokers cough. The doctor or nurse diagnosed you with copd. But were given no information on copd. Not even that copd is slowly progressive. You returned home, fearful about what this diagnosis was and learned a little, perhaps ill-informed information from others. Maybe you trawled the internet where thankfully you found my blog, but not before coming across one of the less informed internet sites that confirmed your worse fears. That you have a fatal killer illness. There is nothing like wrong information to get the imagination going. How long have I got. Weeks, months, years. Many ask. So far I have managed 27 years post diognosis. Pretty impressive huh. What’s more the reaper is not getting his grubby little fingers me yet. Ok back to the stages.

I am not going into the technical details of the all important FEV1 and other lung function details in today’s blog. However your diagnosis will mean you have either mild, moderate, severe, or very severe copd. In most, but not all, you will first be diagnosed with the mild or moderate stage. I am not going to lie to you. You will get very slowly worse. But here is the most important part. How fast you go downhill is up to you. And if you are a woman. It is even more important to do the right thing. Because woman’s lungs are smaller than a man. Sorry it is a biological fact. Being smaller means changes could affect the ladies among us far faster than a man. Let me give you two cases. One takes the correct action. The other does not. These are fictional cases and non of the characters are real.

Jenny is a 52-year-old home-maker. Smokes. Gets little exercise. And has just learned she has copd. Jenny has been diagnosed at the moderate stage after finding she is getting out of breath easier than usual. But decides she cannot stop smoking, despite the cough that is causing more scarring on already damaged lungs. She exercises less, as Jenny reasons it is not good getting out of breath. So chooses the easy option. Watch plenty of good films or soaps on the TV, chilling out with friends watching daytime television or sitting at the kitchen table. Sadly for Jenny. Within five years Jenny reaches the very severe stage. Is given oxygen to keep her vital organs healthy. But continues to smoke and within a few more years. Is dead.

Pamela is a 54-year-old one packet a day smoker, a home-maker having retired from work due to health problems that ended in her being diagnosed with copd. Like Jenny she was told little about copd but chose to research the subject and found that by ceasing to smoke and taking up a healthy lifestyle with some exercise she could slow the illness down. Pam stopped smoking immediately. And took up walking, with some swimming to keep fit. Pam knowing she had to be active also took up several hobbies to keep her occupied while making new friends She enrolled in the local pulmonary rehabilitation class to learn what she could about her illness, and how to keep the worse from coming for many years. Pam finds it hard sometimes to exercise and gets out of breath more easily now she is in the severe stage, ten years later. But realises getting out of breath is not dangerous in itself. And that by doing something, she will extend her life by many years. As yet Pam is not needing oxygen.

After I was diagnosed I led a very active life. This became harder until 6 years ago I was forced to retire as my copd reached the very severe stage and doing my work became impossible. Now even though I use oxygen when mobile. And a scooter to get around. I am active and have many hobbies and interests. Yes I like to pick up the remote and watch a good film. I enjoy a can of lager. In the evening. By day I have other interests.

Remember. If you are recently diagnosed. Keep active. Don’t smoke. Everything else in moderation. And you will live very many more years. If you wish to email me please do so through the contact me tag above. Meanwhile I wish you all a really good breathe easy day. And remember. Although we have our good days, and bad. There is always someone worse than you. Keep a smile. And a laugh. It’s good for the soul…

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