Prognosis through stages

Dear all

i am slowly trying to get my head around this awful news and dreadful disease that you are all more courageous and stronger than me at dealing with and i commend you all as you have given me a glimmer of hope. I just wanted to know if there was any hard or fast rule of maintaining a particular stage of emphysema and how long you can hold it for. I am doing as all you good people have advised eating good food, exercising, taking my meds and have been a non smoker for two months. Its really difficult to try and plan life, have a family, holidays, work, etc if you have no indication of how long you have until the next level. But i guess i am asking the question most doctors avoid and the one that would make somebody somewhere very rich. I am 35 and i have so much life inside my heart and soul i just hope my lungs don't let me down. Happy Sunday and thanks as always for listening

kind regards


18 Replies

  • If you hold on to that love and hope in your heart and soul your lungs will keep going....your attitude will have a lot to do with everything. Good luck - keep posting as we will all want to hear from you :)

  • Good to hear from you again Justin and just to say you will get your head around this disease eventually. Just take your time and take in all the info and advice on here that you can. Nobody can really say how long you will maintain one level of emphysema but you can live a good life by doing what you are doing. Get all the support you can and come back on here often. We are all here for you. xxxx

  • We're not stronger or more courageous jayspurs - we've just had more practice!

    You will learn here and in time you will cope i promise. Progression varies widely from person to person which is why a doc may evade the question. Myself, i have been at stage 3 for 10 years and not about to enter stage 4 for a good while.

    What's important is that you are giving yourself the best possible chance with everything you are doing.

    Congrats on quitting, see that as taking control rather than letting the condition control you. :)

  • I was diagnose 3 1/2 years ago Stage 4. I had some tests last week and the results are the same as then, so no change.

  • hi justin,, you seem to be doing all the right things, stopping smoking alone will most definitely help you 100p.c., but it takes time,,, carry on asking questions and looking at the forum, you will learn a lot, ,you sound a lovely person, you will have a long happy life in front of you if you have faith in yourself, you will eventually look on the positive sides ,,,

    if its any consolation i'm an oap,on 4th stage copd. with underlying health issues, i've had a rough time like so many,,,but still here quite a few years later to tell the tale,, :) kindest thoughts jimmy :)

  • I'm not stronger than anyone else I just get through every day, and try and do all the things you talk of. Don't Google things you'll only depress yourself and it's all rubbish anyway, anyone on here will tell you it's different for everyone.

    I used to think I cant do this and I cant go in case I'm ill but now I plan and people know if I'm ill at the time I wont be going. Makes things as easy on yourself as possible, I use oxygen and I was really embarrassed to go out with it on, but now I don't care so when I go shopping I have a wheelchair, my husband pushes me to and from the car but other than that I walk around the shops so I keep mobile, most shopping centres hire out mobility scooters so this time of year I'll hire one and stick to inside, you can hire them for going away makes life so much easier.

    Good luck


  • Thank you all for you kind and positive replies. I think probably like everyone here i have googled the internet until there is none left trying to find a cure or someone to say this illness is a piece if cake and you will not notice having it. I have come to the realisation that there is no cure and its the luck of the draw do the things that you wise experienced people have advised and this will better the odds. I really am glad i have found a group of brave strong people who have bonded with each other in the face of adversity and hope to join the clan.

    Thank you all


  • Carry on as you are. You have a positive attitude which is good.You can always speak to blf for any medical questions you have, and we are here for each other. xxx

  • Hello Justin. I'm not brave or courageous, I'm a coward deep down often. Stay with your attitude and you will have years to live your life. Take note of everyone's answers.xx

  • Morning Justin! I think you have to try and be pragmatic and enjoy life while you can. This illness has made us more focused, made us realise we need to enjoy every day and do lots of things when we can. All these fab memories keep us going when my husband doesn't feel so good. BUT he does so well and nothing holds us back. Get on with your life and enjoy every minute - as my gran would say: "You could get run over by a bus!!" Have a great day, lots of love TAD xx

  • PMA and enjoying life will keep you going longer than any medicines will.

  • Everybody's lung function deteriorates as we get older, that's natural. But nobody knows how it will progress for each individul. Stop smoking, start exercising regularly eat well and it will progress as slowly as possible - my resp nurse says same rate as a normal lungs.

    After not been treated for 6 months by incompetent GPs in the initial stages, mine has been improving for 3 years!

  • I really think you are reading too much into this. You are young, you have been diagnosed early and in a relatively moderate stage. With a few very simple safeguards, you life expectancy hasn't really altered. It would have altered more if you hadn't been diagnosed and you carried on just get on with life. Start claiming back things that you gave up or reduced. Live happy, eat well, exercise gently and build yourself up. I wasn't diagnosed until I was 49....I am now 66 and for most of those years...15 of them, I carried on smoking. Well, I enjoyed my fags and I reasoned that I had already damaged my lungs so what the heck. However, I woke up one morning and thought....hey, I've done most of the things I've wanted to do, had a full life but there is still one thing that I want and that's to see my grand kids grow up. So, I grew up. Gave up the fags, started looking after myself, started to exercise, kept out of damaging areas, especially around barbeques and learnt to adapt my life around my condition, which is now severe. It is only severe because I let it get there. So from here on in, anything that causes you to cough or become SOB without exercise, avoid. By this I mean those atmosphere destroying aerosols, strong scents and smells, chemicals etc and get on with your life.

  • Thank you Cornish Brian

    I really needed that, since I have been diganosed my mind has been running away with me and I concerntrate on work, home anything. I have heeded your words and will do my upmost to allow me and my wife to have a normal full and enjoyable life.

    Thanks again Brian

    I truly mean that :)


  • You've had so much excellent advice already from everyone I'll not say any more...just best wishes!

  • Ahhhh bless. I don't post a lot but I wanted to say I know EXACTLY how u feel. Firstly calm down!!! Second try changing your mind set that helped me although hard....very effective and the best comes last. Pulmonary rehab ask your doctor to refer you it'll do wonders for your health....physical AND mental!!!!! Best of luck.. X

  • Hi Justin as Vashti said you have been given great advice from everyone. I want to wish you well and remember there is always someone here to reply to any queries you may have. Best wishes to you and your wife x

  • Hi Justin ,Welcome.Do not google ,you will drive yoursrlf up thr wall.Take each day as it comes.Dont panic and stay with us :-)) mags xxx

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