Hiya guy's, just had my FEV1check up to see how my emphysema is doing. Last time I had it done results were down again for the

Hiya guy's, just had my FEV1check up to see how my emphysema is doing. Last time I had it done results were down again for the

3rd time since diagnosis in Jan last year. Were"232.07@64%"now down to"101.11@55%"predicted,started of at 77%predicted.Nurse said that this is not good(at 44yrs old ) & it was a large drop in a short space of time. Now this means absolutely nowt to me(just thick)bit she also said if it continues to go down as fast, it's a nebuliser and then end stages. Even the inhalers not really working.

Haven't said to much to karen as don't want to worry her(anymore than she already does)but if im honest, it's a little bit of a concern as I don't actually know what the results mean apart from the fact that im getting worse very quickly.

Anyway, you all take care and breathe easy Aidi x :-)

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13 Replies

  • Hi Aidi,I too went down very quickly and am now in gold stage Emphysema awaiting a lung reduction op in London..My advice to you is try and exercise as much as possible and keep that breathing up.I done this for two years and it helped..Every copd person is different ,some decline rapidly and some can stay at a stage for mths even years.

    I am now on nebs,oxygen,and morphine.Up until last year I was fine and was actually digging my garden.Now I can't walk 50yds..Take care of yourself.Exercise,eat well and get those zzzzz in and keep that breathing up...Good luck..Laura

  • Thanks Laura, I find just walking across the kitchen(8ft)is enough to make me breathless now. I was told I was stage 3mild to moderate when diagnosed, now stage 4 / 5 moderate to severe (more severe)but I just keep plugging away at it. You take care and breathe easy Aidi x :-)

  • Last year I was 3-4 stage,and since then rapidly declined.I was in pulmonary rehab and found I was getting worse,so they done a cat scan to see what was causing my sob that came on for no reason..I was told i am gold stage which is the end stage and thats all they can do is make my life a bit easier. I am hoping for a new lease of life after this op ,but I wont hold my breath lol..Take care Laura

  • Porche have you got any idea why you went downhill so rapidly?

  • Hi Sohara,I can honestly say I don't know!..I was happily getting on with life and have always been an active person,cleaning house ,gardening etc,but in all honesty I think after every chest infection I damaged my lungs more..I will add though that I moved from a house(due to stairs) to a bungalow which was damp..I think damp spores played a big part in it.I have since bought a dehumidifier which is amazing! I developed a persistent cough in the summer and realised it was the damp spores that dried out acting as an irritant!

    I was in pulmonary rehab for some months and it helped a great deal.Exercise is really good to a certain extent..My advice is to eat good food in small portions,exercise,and take things at a steady pace..I am quite ill now and can't wait for this op,but being in hospital and seeing people worse off than myself I am grateful for small mercies..Take care Sohara and good luck Laura

  • Hi Aidi

    I noticed from your first post a few weeks ago that you didn't feel able to stop smoking. Most people on here have smoked and some still do. No one is here to judge as we all know what a powerful addiction nicotine is . I smoked fo 48 years but quit shortly after diagnosis 6 months ago . I too am 55% which is still just within the moderate stage .(stage 2 as I understand from the various tables ). still miss cigarettes but I now honestly feel fitter than I have for years.........no cough , chest infections and only sob on hills and Inclines.

    Most seem to agree that continuing to smoke will result in a much more rapid decline in your spiro numbers but more importantly in your health and your fitness level. The implications are serious and for someone so young could be quite devastating. For example permanent use of oxygen and a wheelchair.!

    I am sorry if this sounds like scaremongering . I am fairly new to all this and not that comfortable using a computer so don't tend to post much. I hope that someone with more knowledge of what can happen in the severe and very severe stages will be along soon.

    Cheers Coastal

  • As has been said we are all different. I was diagnosed 3 years ago with very severe, Stage 4, emphysema. In those 3 years nothing has changed except the medicines have made my life a lot easier. I'm on 1/2L/min oxygen, which is about 1 1/2% more oxygen than there is in the air. I still work at my part time job, go shopping and do most things even if it's a bit slow. I don't do actual exercises but keep quite active. We have 14 steps on our stairs and I always try to go up them in one go at a normal pace. I do get puffed but it's worth it. So, for me, keeping active is the key.

  • I smoked for many years and really wish I could turn the clock back! My chest was chronic but I like a fool was addicted to the damn things! I gave up when the damage had been done and is still progressing!I don't want to preach but if your still smoking.. please try and give up as I can honestly say they will get you in the end.I suffer with fluid retention,giddy turns,sob that is so severe it scares me senseless,in turn the depression and anxiety that tags along with the panic attacks that makes me so tackycardia I have to have sedatives and morphine to calm me down and get my breathing stabilised.I hate the steroids, but in turn grateful to have them when I cant breathe.I eat too much on them as your brain don't tell you when your full so this makes you sob.Mood swings are unbearable while on them but at least they give you some energy to walk a bit...All in all life is quite miserable when you don't have your health..I wish I never smoked!!!

  • I know how you feel Laura, I also have Dystymia as well as a heart condition and like you have panic attacks, some more severe than others. I haven't worked since 2009 when I took voluntary redundancy from B.T(health reasons)the stress and anxiety were bad enough before I was diagnosed with emphysema now it's even worse. I do have really bad days but I put on my public face and get by with alot pf B/$#!# and bravado, but the truth is I can't be bothered but I keep going for my kids, especially my little baby girl hannah who is 2.

    So there you have it, moan over you keep smiling and don't let the B@$#@^$ grind you down :-) x

  • Aidi, Please NEVER feel that you 'can't be bothered' if you don't bother who will? we all have to push ourselves on.

    I do 15 mins on my exercise 'stepper' every morning...and nearly every morning I think to myself , can I do this today? but I do it and I cannot tell you how much this alone has helped me

    I have had bronch since a baby...but after my major lung ops when I was 15, I more or less did nothing except take antibiotics about 4 0r 5 times a year when I got my chest infections.

    In later years though everything got worse....now I have severe Bronc, severe COPD & severe emphysema

    Now I HAVE TO BOTHER or I will reach the end stage pretty quickly

    My aim is to do everything I can to delay the progression of this disease , and following all the advice you get on here REALLY does help,,

    No one can stop smoking for you, Only you can do that....no one can do your exercises for you......PLEASE bother you will be so glad you did

    Love Sohara

  • I reckon the only things that stop me going downhill rapidly are mainly that I stopped smoking.I force myself to go out on my wheel chair and with my walking stick because they exercise different muscles every day unless it,s raining which my lungs can,t handle.I quite often end up in tears but I,m still here.I think we all have to fight to live with this nasty disease,rule it don,t let it rule you.I want to live at least as long as my dad did,he died at 62 in his sleep of a heart attack.I was 58 this year,2years ago I would,ve said I was almost "normal"breathing wise although I was diagnosed with severe Copd in 2004.So I have gone down hill pretty quickly.I know I won,t beat it but I sure as hell will make it wait!I don,t even know the numbers you refer to.My son is 28 and he wants his dad to hang around so I shall oblige for as long as I can.Of course we are all different but reading all the posts on here it,s clear the more exercise we take the better we fair.Good luck Aidi and if you have,nt already dump the smokes buddy.D.

  • Thanks guys, it's just some days are harder than others, unfortunately it's part of my depression. I get good days and bad both with mood and breathlessness so it's a bit of a juggling act. My dad died from emphysema as well, and he also suffered with depression but I like him worked all the time I could and it was always heavy outdoor work so plenty of fresh air and exercise. I've got kid's and Karen and these are my life and that is what keeps me pushing myself hard everyday. Anyway you all take care and breathe easy Aidi x :-)

  • Aidi I have luckily never suffered from depression , so I am not a good person to talk to really, as its hard for me to fully understand just how low this can make you feel.

    But I do feel that if you start to take control a little of your life and start to make some positive moves to make your health better than that must improve how you view life.

    The first main thing that you must do is STOP SMOKING.....you know this will benefit you in so many ways, and if you do manage to do this you will feel so much better about things

    I know a drug addict, who was also an alcoholic, who eventually gave up drugs , and became teetotal ( all with great difficulty) but he said by far the hardest thing for him to give up was cigarettes......he said the psychological aspect of quitting cigarettes was his hardest battle .......but he did it and YOU can do it too. The Alan Carr book helped him a lot , and strangely becoming teetotal helped him too as he found it impossible to go into a pub and not smoke. Also giving up weed as he had smoked that too ....

    This guy had been made depressed before by his inability to stop smoking,

    Think about it Aidi, is your 'inner self' giving you a reason to smoke by telling you that you are depressed , I am sorry if that did not come over as I mean it too, but you hopefully will see what I mean.

    I wish I had some magic wand that I could wave and all those people that want to stop smoking could just stop....

    'Just like that' as Tommy Cooper would say

    But one thing is for sure: YOU can stop...it may not be easy...but you CAN stop

    Good luck

    Love Sohara

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