I was diagnosed with COPD last week:-

I was prescribed Spiriva, but read the contra indications, and as I have only one kidney I am reluctant to take this medication until I discuss this with my GP (I will be seeing her Tuesday evening after work).

I must say, ignorance definitely IS bliss - in my case at least; I was getting more and more breathless, but as I have had part of my left lung removed and was told I also had a touch of emphysema I assumed the breathlessness was covered by these two facts - I am now rather freaking out, because now that I am concentrating on my breathing and how good/bad it is, I really feel as if it is getting worse by the day (which, hopefully, it isn't). As a result of this website and some of your invaluable comments I will be asking to be referred for pulmonary rehabilitation, but I would be grateful for input on the following; most things I read say this is a 'slow' degenerative disease - everyone is different, but what is generally meant by 'slow' - weeks/months? Also,have any of you tried salt pipes or, more importantly, the Airnergy machine (results of which look pretty good according to the testimonials etc)? Any tips of any kind for a newbie would be much appreciated (the blog about breathing techniques by johnwr is invaluable - thank you).

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  • Welcome Dedalus, you will find everyone so helpful on here. I will leave most of the advice and help to those who have much more experience than I do but I wanted to just say something that may put your mind at rest if I read it correctly.

    You said you knew you had emphysema and have had this for some time - this is actually one of the COPD illnesses, the other main one being chronic bronchitis. The way they put it is COPD is an umbrella term for these 2 illnesses and a few other chronic lung conditions.

    I have only been here for about 3 weeks and this place is great, the support is fabulous and you cant learn from a better group of people who live with these things every day

    When I first joined, I was in panic mode and I was given so much support so use all of us for anything you need

    Kat

    xxx

  • Thank you for your reply and reassurance - so good to have this website and people to reach out to. (I was originally told I had 'mild emphysema' so didn't think it was anything to worry about - doh!!)

    xx

  • I was diagnosed with COPD in 1998 and I'm still here and there has been no great change in my condition. Stopped smoking and have learned to manage the condition to the best of my ability. Ask your GP to send you for Pulmonary Rehabilitation to learn techniques to manage the condition and build up your strength. It's the best thing you can do. Good luck!

  • Hello Dedalus. The best place for information is the BLF site. There are many things you can do to to help you live with COPd, including exercise which makes you breathless (seriously), a healthy diet and a healthy weight.

    People live with it for many years without any noticeable deterioration. I have a friend who has had COPD for 20 years, is 69 and still working. Avoiding infections is also important as well as taking your medicine. I am assuming here you don't smoke as that is the single most important thing to pack in.

    I am on Spiriva and it helps me a lot. You are right to check it out with your doctor to be on the safe side though.

    I can't answer your other questions as there is nothing else I use or take or it. I'm sure others will help out though.

    Lynne xx

  • By all means, play safe and have a chat with your GP. Spiriva can be prescribed for someone with one kidney but as the kidney removes the tiotropium from the body it can increase the potential for side effects. The GP should be monitoring the effects from the start.

    Depending on your personal ability, you may not be at a stage where pulmonary rehabilitation would be used. The GP will look at how your medication helps and if it improves your breathing etc. You say you are only recently diagnosed with COPD, if there was any major concern then you would have been referred to the hospital quite quickly.

    It may be worthwhile asking about seeing a respiratory nurse if your breathing is of concern. Mine was erratic and dysfunctional but the nurse helped me change the way I breath and it's a lot better for me now.

    > but what is generally meant by 'slow' - weeks/months?

    Normally years. With many sufferers it's down to being dignosed then managing your condition, which should see you live for many years yet. Further tests and results will tell you more. The more you read on here, the more you'll realise that the initial panic is the worst thing, then you read about those who are well into their 80s and 90s. We all go eventually, maybe COPD shortens the life span, but who knows for sure?

    There has been discussion of Airnegy before - blf.healthunlocked.com/ques... - and blf.healthunlocked.com/ques... mention the device. If you want to see if something has been discussed before, just put the key word in the search box at the top right ;-)

    Oh, and welcome to the forum :-)

  • I thought I had sent a reply to everyone - but not sure what has happened to it - can't see it anywhere; just hope there won't be two appearing in the same vein now...........anyway, THANK YOU all so much for taking the time to reply, and I feel much, much better re my long-term prospects with this disease - the reason I asked about the 'speed' of the degeneration is because I went to see my GP last week as the breathlessness had worsened quite a lot; I thought I had a chest infection. When the GP tested my oxygen levels she sent me straight to the hospital - where I was diagnosed with COPD and given the prescription for Spiriva.......

    Thanks for the tip about the search box at the top Gordon - would have probably taken me weeks to find that.........

    Am sure I'll sleep better tonight after the reassurance you've all given me.

    xx

  • Just a quick thought,When I sat and chatted to the experts at the hospital, they expained about panic attacks and how easy it is to self induce them, so Dedalus I know it's not easy but try not to concentrate too much on your breathing. If you can find a distraction when you feel you are getting short of breath (I've got a little electronic game I play with) it really helps, because I concentrate on the game and not the breathing. Spiriva I have found a great help, I wish you luck and I hope you can use it.

  • Thank you moneal - you are so right! I realised yesterday that this was happening and today, when I went back to work, I was so busy I didn't have time to think about my breathing, and as a result can't remember being bothered at all about shortness of breath (even after walking upstairs). Great tip - again thank you.

  • Another thought, I got a CD on self-hypnosis to help control Panic Attacks by Charles Vald, I was a not to certain about it, but after listening to it a couple of times I suddenly realised I was using what he said. Basically he gets you to think of a particular place, in my case the garden he suggests, and by saying to yourself Relax and think about the garden. I was amazed it calms me and since I first thought about it I have added a garden bench and some rose bushes which are there each time I visit. Now I use it before I get too uptight and I can feel the difference.

    It may not work for everyone, but I knew some of his other CDs had been used by friends with success.

  • Sounds good - a bit like meditation - all worth a try - will check out the CD on e-bay (thank you).

    Brilliant - love this forum.

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