Falling off the Precipice
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.
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?
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, which 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
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.