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Hey guys I've been registered on here 2/3 weeks now, I have enjoyed reading everyone's posts. This is my first post, be gentle with me lol ! First of all, I was a VERY VERY HEAVY smoker for over 35 years, you could say I ate them. I didn't function without a CIG in hand 😥 I was a joiner for all these years working in many hazardous environments,yes..I used to get the odd cough wheeze, nothing like now.... I've been smoke free over 9 years now and can't stand smell now.. I was diagnosed with COPD MAYBE two years after I quit ?? Thing is, I'm not sure what stage (didn't know there was stages till I joined here ) I've never had to take antibiotics YET I did do a pulmaryrehab class which I felt ... Not to bad...I have limited mobility due to a back problem (post op . Discs out etc ) so my COPD seems to get bad cos I don't ,can't do much daily mobility Can I ask my Gp for information on what ever stage I may be at ? Any info would be great 😁 sorry for my rant xx

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30 Replies

  • Posted

    No need for apologies, Joe.   Personally I don't find the stage thing useful, although some people on this forum do.    In my opinion, what's really important is your percentage lung function, which you can ascertain from a spirometry test.

    Mine hasn't deteriorated below 70% since i was diagnosed 3 years ago:  I do exercise most days, including the things I learnt at rehab, particularly breathing techniques;  I use two inhalers daily, eat healthily and stay away from pollution as much as possible, especially other people's cigarette smoke.

    I'd be asking yr gp about another spirometry test and then have them every 6 months or so to check if you're stable or deteriorating.

    In the group I went to, there were people who were quite immobile due to other conditions or because they were at a stage where they needed to drag an oxygen tank around  with them just to move, and the pulmonary physio's modified the exercises for them.     Your back problem wouldn't prevent you from doing the breathing exercises anyway.

    Good luck Joe:  it's a rotten thing to have, but it is manageable for many years for most people

    • Posted

      Hi Jude!  I hope your appointment with your GP went well.  I appreciate all of the input that you make to all of us.  Please don't think me rude....but may I ask how old you are and how long you've had COPD.  You really seem knowledgeable and on top of things.  If it would make you feel better.........I am a VERY young 73 (people guess that I'm in my 50's) and I was diagnosed about 2 years ago but feel that I've had COPD longer than that.  I AM very active and am not suffering as many of the people on this forum are.  Believe it or not, I pray for all of them.  I agree.........too many people put too much thought and worry in to "stages".  Keep up the good information!
    • Posted

      Thanks Sandy!  

      It's never rude to ask questions:  I'm 68, was diagnosed with COPD about 3 years ago.  I'd smoked for more than 40 years but had stopped a couple of years before that, obviously many decades too late and then had a heart attack.    

      I've always been very strong & healthy even when I was a heavy smoker, so accepting the limitations COPD imposes has been very hard for me and I wouldn't have been able to do so without the pulmonary rehab group I attended for some months.  

      I'm also often taken to be younger than I am, but in my case that's genetic, obviously not from clean living!  My parents & my brother (all now deceased) always looked much younger than their ages and my sister still does.   

      It's been a help to remind myself that I would've been slowing down somewhat at my age anyway, which of course we all hate, but is inevitable as we age - better than the alternative, as they say!

      I've been able to deal with the COPD much better since I took myself off the cholesterol lowering statins I was prescribed after the heart attack as life wasn't worth living because of the side effects.   See the relevant forum if interested.

      I don't pray for anyone because I don't believe in it, but you go for it if it works for you.

      Thanks again for your positive post:  I really appreciate it and all the best to you:  keep on keeping on!


    • Posted

      Wise words Jude, I'm 69 ,stopped smoking the dreaded weed back in 1992. I have to agree with you all the numbers people put on here are far to baffling for me ,,,like you I go on his I feel on the day ,and do as much as I can to keep fit ,and thank god for pulmary rehab ,,,,life savers in my opinion ,

      and I to stopped taking statins due to the side effects ,,,,

      after a bout of time with a bad back ( 3 weeks ) I was back at the gym yesterday 3 Klm on the treadmill .

      all the best Jude '

  • Posted

    Hi Joe. Sorry to learn of your condition but .... join the clan !

    I totally agree with jude - I had never come across "stages" before - just bad, very bad and b awful (that's me). Most GP practises in the UK now include an "asthma nurse" who should conduct spirometry tests every 6 months. Mine was 21% when 1st diagosed 8 yrs ago but improved for a while after I quit smoking cigars (again) but is now down to around 15%. Beware that the NHS operates a Catch22 system for treatment - one has to reach a certain level of incapacity to be eligible for treatment at which point one is deemed to be too ill to survive any invasive op or too far gone to be worth bothering with for any of the new systems.

    Sorry but you'll have to fight hard for everything - despite being literally at death's door 4 times as a result of exacerbations, I only got home oxygen as a result of the dogged persistance of my wife.

    Keep up the breathing exercises and .... good luck !

    • Posted

      By "treatment" do you mean surgery?   Because there are many treatments which slow down the rate of deterioration and help make the condition more manageable.

      What "new systems" are you referring to?  More info, please!

    • Posted

      Hi Jude.

      Yes, surgery in all its forms, or 'procedures' in American English. The most invasive is a lung transplant - apparently wonderful for those who survive the op, er sorry, procedure, but I was given a less than 50:50 chance of survival. Less invasive is an op to clear out the dead bits in the lungs - can't remember the surgical name for it now - but again the mortality risk is significant. Although my original consultant said that (with me at 20%+ back then) this was a possible route for me, but his replacement is not at all keen.

      As for the minimally invasive, the Brompton in London is pioneering (at least in the UK) the insertion of little coils in the lungs usung tubes down the throat - again not a cure but turns the clock back by a couple of years. My consultant referred me to the Brompton for this but after a couple of months the answer came back 'no' - unsuitable and non-beneficial to someone with a "prospective" Fev1 of only 15%.

      Someone on this forum did mention something about steam cleaning the lungs - or that's what it sounded like - but I haven't been able to find out anything about it anywhere, let alone UK.

      So, thanks to Catch 22, the scrapheap beckons ..... unless you know different of course ! 

    • Posted

      Hi emmgee your lung function is very low and I really feel for you.   I hope you are getting all the help you are entitled too though I am aware that the USA is very different to the UK.  

      With a lung function that low here you would get a team - a consultant,  doctor,  nurse and social worker all working together to help you.  This is patient centred.  Are you getting that where you are?  

      I  think it's daft that you have to wait until you are very severe to have a chance of a lung transplant or other extreme measures to help as obviously the worse you are the less chance you have of it being a viable option.   It sounds like it is not for you now.  That's a real shame. 

      Hugs  Bev xx

    • Posted

      Hi Bev

      Many thanks for the hugs - I feel better already !

      I think that 'team' is not quite the right word for what we have in the UK and, despite all the hot air from the politicians, nor do we have 'patient centred' culture. Budget centred would be more accurate.

      Yes (after a great fight by my wife) I do now have a respiratory nurse (6 monthly visit plus on call) and have had a couple of things to assist access or mobility from social services but nothing like a social worker or indeed a proper 'team' approach from the others.

      Ho hum !

      Keep fit - I wish I had the breath to hug back.

    • Posted

      Hi emmgee well I am in the UK as well and I know of others with a lung function as low as yours and not as low who do have a team around them.  Maybe your wife could see your doctor and ask for it?  Or if she has asked already,  demand it.  It is your right.   It is awful that you have to fight for everything but I guess that's the state of the NHS today sad 

      I have breath to spare so lots and lots of warm cuddly hugs.   Take care

      Bev xx



    • Posted

      Hi Bev

      Very many thanks for that - the advice and the extra hugs too !

      It's certainly worth a try. Will keep you posted.

      Meanwhile you take care too .... and enjoy yourself while you can !

      Emmgee xxx


  • Posted

    Hi I guess you are in the UK?   You should be having at least an annual review with a respiratory trained nurse in the mild and moderate stages.  If you are severe then it should be at least every 6 months.  These are the NICE guidelines. 

    If you want to know your lung funtion and stage you can either ask the doctor or the nurse after your review.  I don't see any reason why you can't ring the surgery and ask them over the phone as it should all be on your records.  

    The stages are a bit deceptive though as I am classed as moderate even though my lung function FEV1 is currently 78%.  This is stage 2 but only just out of stage 1 which is mild.  This means I am still active and can live my life fairly normally with some sob (shortness of breath).  I get sob on walking up hills and steps but can do it slowly. 

    I agree that much depends on how you feel rather than the different stages.   I have been to PR and they can adapt your exercises to suit your needs.   Bev x


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