Falling off the precipice – and my appointment at the Royal Brompton

Falling off the Precipice

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Anyone with stage 4 COPD will remember the time that they seemed to be  walking around alright, just slightly out of breath on exertion, being able to shop, clean up, taking a shower or bath was a piece of cake and although just a bit more tired than you used to be things weren’t too bad. An exacerbation at this time only involved a few days on antibiotics and no visit to the A&E. Then, suddenly this terrible thing happened and you could no longer walk about as freely as you did or for a matter of fact do anything you were once able to do. It feels like at this time the disease has come around given you a good slap in the face shouting ‘I’m here, this is it now you can’t ignore me any more and I am not going away’! At this point in the disease patients leave work, stop doing many of the things that they used to do and physically start to give in to the disease. Dr Kemp explained this to me last week nicely he said, ‘you keep compensating, compensating, compensating and compensating until the point comes that you can no longer compensate any further’,  I think of this as falling off the precipice.

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At this point because you have stopped working, socialising, popping to your local shop and doing all the things you liked and enjoyed doing before you become so unconditioned this cycle continues until you are barely doing anything. It can become so bad that some people actually need oxygen to breathe on exercise. This new breathlessness can become very debilitating and you can also gain a lot of weight too; perhaps you have given up smoking and with the constant courses of steroids the weight has got out of control which also complicates the situation further. It can feel as if every day you have your back against the wall and it can and does in many cases lead to depression. You can feel so alone because no one really understands what you are going through. Your family may say, come on go on a diet and lose weight and get to the gym. Not very helpful!  So, the first thing on your list to claw back some of your fitness would be obviously to lose weight. I have mentioned this many times in a variety of my posts and you can find plenty of them in the archives I will put a link to a few at the end of this post. I know it is easier said than done because I am in that predicament right now!

SO WHAT CAN YOU DO ABOUT IT?

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Starting to lose weight and get into some kind of exercise routine is very hard when you find breathing difficult. I often think how come I managed to stop smoking, whichsnails required loads of will power but this weight loss thing seems to be slipping out of my grasp all the time?  Before I can take up a really good exercise program, I would like to get off  at least half of my excess weight. But, you still need to incorporate some safe exercise whilst you are losing this weight and I have contacted my local pulmonary rehab nurses and will be starting with them as soon as possible. I know it is going to be a slow process climbing back up this precipice and I will need all the help that I can get. I am aware also though that it will be absolutely worth it!

 

My Appointment at the Royal Brompton

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It was a long journey, and the traffic was unbelievable but we arrived at the Royal Brompton at time after an overnight stay in a Travelodge which was very pleasant. Parking is terrible in London, my daughter managed to find a disabled spot and then catch me up. I had a CT scan and loads of breathing tests, one of the tests was done in an airtight cube which was very claustrophobic for me. I am still unsure what that test proved I am still researching it. It took two hours to do all the tests and I am hoping to get a copy of all of them so I can have them assessed at my own leisure. The outcome was that I am not suitable for valves in the part of my lung which is the worst! How did I feel about it I was shell shocked for 2 days but am coming around now. It is all due to collateral ventilation, I have previously written a piece about this and have included the link. I didnt think that I would have it but unfortunately I have so that is something I have to accept. They can however operate if I get all this weight off and do my pulmonary rehab course. I have to get fitter. They can then cut off the top of the offending lung and that should help, there was some talk of perhaps having a valve or two at the bottom of my lungs but the main issue was my being fit enough for an operation. So, I have to get this weight off and step up the exercise or I am not going to be able to benefit from any kind of intervention to improve my life.

MY DIET NIGHTMARE – But I’m doing it, well sort of!!

The 10-Step Programe – does it work?

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Medications I took for asthma cure – Asthma Story

I found this piece very interesting to read and it would be interesting to find out how many people’s COPD started off with  chlamydia pneumoniae and mycoplasma. I started on Azithromycin yesterday and I must admit I am feeling quite a bit better today but that could just be a coincidence. But hey have a read guys like to keep an open mind about everything.

The medications I took to completely cure asthma using research of Dr. Hahn relating asthma to the bacteria Chlamydia pneumoniae

Source: Medications I took for asthma cure – Asthma Story

WHEN ONE DOOR CLOSES – Could a better one open?

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dalai-lama-stroke-luck-wonderful-4f7hMY DAD was always one who had a saying for everything, be it good or bad, but mostly when negative things were whizzing around in your life. A couple of his favourites were  ‘nothing worth having comes easy’ and when you were expecting something good to be coming your way, ‘don’t count your chickens before they hatch’! My Dad was the eternal philosopher, verging on the pessimist, who had been brought up in the war and had been subjected to a very hard life. His father had been a coal man and was so soft with his customers, collecting payments, that he ended up going out of business. My Dad was one of four boys and his father ruled the house with a rather large and well used rod of iron. His father had suffered some injury to his hip and walked with a limp, which was quite painful at times and this caused him to have a very bad temper. My Dad was therefore quite strict with me and he often said to me, when I felt the task in front of me was too huge and almost impossible to achieve, ‘there is no such word as can’t’. Other favorites he would bestow on me when I was walking around the house with a long face, after those chickens hadn’t hatched after all were, ‘when one door closes, another one opens’ or ‘everything happens for a reason’ and ‘every cloud has a silver lining’. I must admit that as a teenager these sayings did not really help me a lot. And, looking back to when my children were teenagers, I don’t think they would have helped them much either. I would have sucessfully wound them up as they say nowadays.

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My Dad is dead now and he died before I got the diagnosis of COPD/Emphysema/Chronic Asthma and I was sat wondering today what saying my dad would have fixed to this illogical illness and my life now. He was a great fan of Star Trek and would have associated my fate with that of Leonard Nimoy I am sure of that. I am sure also he would have thought of something, two favourites come to mind, ‘you’re never given more than you can manage’ and ‘there’s always someone worse off than you’. I certainly do not feel like that when I am in the midst of one of those horrible exacerbations that a lot of you are familiar with, maybe some of you have heard about and some of you perhaps have seen a family member or close friend struggle with. It’s not a very pleasant experience feeling like you are suffocating to death and there is very little that can be done, except taking antibiotics and/or steroids, its just a waiting game really, waiting for the symptoms to subside. It’s annoying really because they come on so suddenly and yet seem to take forever to go, another saying comes to mind, ‘patience is a virtue that very few possess’ and ‘you have to take the rough with the smooth’. Oh yes, he had a saying for everything, my Dad!

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Today I have been in an excitable and then reflective mood because I have received my appointment for my consultation at the Royal Brompton Hospital with Dr Samuel Kemp. They are at the top of the tree in alternative ways to help people with COPD and the most experienced in the UK in using the endobronchial valves. It’s a long way to go at 190 miles away but if they can help it will definitely be worth it. How life can change it was only a few weeks ago I was sat crying feeling hopeless because the consultant at Jimmy’s wasn’t on the same page as me. He wanted me to get worse before he helped, they were probably running out of funds!  Another great saying my Dad would have definitely used tonight and that would be ‘when one door closes another one opens’ , yes Dad, I can still hear you!

I have learnt a lot of things during my journey up to today and that is your health is yourRely-Quotes-Achieve-success-on-your-own-If-you-want-success-then-dont-rely-on-other-people-to-do-what-you-can-do responsibility it is up to you to question and find alternative paths to go down.Well what is that saying ‘if you want something doing do it yourself’ and I definitely wouldn’t be where I am today if it hadn’t been for the wise teachings of my Dad giving me the ability to stand on my own two feet and question everything. I am now trying to be optimistic that these doctors will be able to help remove the trapped air from my lungs so that I can breath better than I am doing at the moment, I will then have a better quality of life, I hope!

21591cb3bf11c15a1b8bd340fb8ea44fHowever. my 27 year old daughter has been throwing about the sayings these past weeks. Because, she said, I don’t want you to get disappointed if you can’t have the valves done. HELP! she’s turning into her Grandad!! But, I suppose that’s not a bad thing, he was a wonderful Father even though he was the worst pessimist going.

Lets give a thought to the people in our life that have done so much for us, our parents, family and friends –

For more on this story see Falling off the precipice – and my appointment at the Royal Brompton

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