I've recently been diagnosed with copd. How long does each 'stage' last? How long before it starts to seriously affect my life?

I'm 51yrs old and been given an inhalor to take twice a day plus 1 to take when needed. At the moment my main symptom is breathlessness. I haven't been told what 'stage' i'm at and my GP will 'see me again in a yr' Stopping smoking is proving to be very difficult and i wonder if it will really be worth it.....my GP says it will buy me an extra 8yrs but what will my quality of life be in those 8yrs?

32 Replies

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  • If you carry on smoking then you won't have much quality of life left in 8 years time, as I know to my own cost. Providing you follow your GP's advice and eat sensibly, take plenty of exercise ( you can do this even when breathless :) in fact, the more breathless you get the better as you know it's doing you good!) then your outlook is pretty good and your condition will probably stabilise. Asking how long each 'stage' lasts is a bit like asking how long is piece of string :) lol . A lot depends on how YOU look after YOURSELF :)

    If you have any worries or questions or are feeling anxious about your diagnosis do please call the BLF Helpline, they have nurses there who know an awful lot about this condition and will probably have the reassurance and answers you need right now. Their number is 03000 030 555 and they are open Monday to Friday 10am to 6pm.

    Very best wishes to you and yours for a long and happy future :)

  • Sorry, you must have posted yours while I was typing mine!

  • Hiya Kazz51, it's impossible for anyone here to say what stage you're at. The one thing you absolutely must do is stop smoking immediately. It will slow the progression down dramatically and if you are not too severe at the moment it could take many years to progress to the severe stage. I was diagnosed 20 years ago and it's only the past 3 -5 that I've been severe, but I didn't give up smoking until 3 years ago. I'm not expecting to pop my clogs in the next few years even now. No smoking, exercise, eating healthily and keeping your weight reasonable will all help enormously. Good luck! Libby

  • Hi Libby,

    Hope you don't mind me asking but what are your sats like and are you on oxygen at all?

    Lorraine

    :)

    xxx

  • Hi Lorraine, my resting sats are always good at around 95 and I'm not on oxygen. Some days I can barely walk 10 metres without being seriously sob. Next time my copd nurse comes am going to get her to take them after I've moved around, she's put off coming the last twice though (something else for me to moan about!). I do know though that it's possible to have good sats despite being practically on your knees, someone did explain to me once, but I've forgotten! Libby PS I do know my lung capacity was 24% four years ago though, and it's far worse now, at 24% I could still get around, drive myself etc. Not now. x

  • Hi again Libby (apologies Kazz),

    How SOB were you when diagnosed 20 years ago, how old and how come you only decided to quit smoking 3 years ago or did you have failed attempts before that?

    Sorry, I'm just really curious,

    Lorraine

  • Hi Lorraine, in the beginning I was living a "normal" life but getting slightly out of breath on occasion. The reason I'd gone for tests was because my mum had it (although mum barely smoked, 5 - 10 a day max) I was around 40 then, 60 now. I tried to give up many many times without success. Everything was ok until about 5 years ago when I had pneumonia, I thought it was just a cold and carried on working, next thing I was in hospital very ill. That's when the emphysema became severe. I gave up after that for a few weeks but went back to the cigs. January 3 years ago I bought some lozenges and that was it really, I'd given up. Far too late, but better late than never. Libby

  • Hi libby

    When you were diagnosed 20 yr ago do you know what stage you were at or your fev1?

    I am 58 and have fev1 at 57%. Think I have had copd at least a couple of years. The last month my copd seems to have taken a rapid decline. Did you smoke a lot 3 years ago? Is it fairly common for people with COPD to progress at the same level as you or do you feel you have been lucky or more

    active etc? Sorry so many questions but have not heard from anybody who has had COPD long term. Very best wishes C

  • Thanks to all of you for your replies :)

    My GP gave me info on copd and i am aware of the benefits of diet (in my case i need to gain a little weight), exercise is a problem as i also have fibromyalgia. I have tried to stop smoking using an inhalator, can't have the tablets as i also suffer with depression and am on antidepressants. The diagnosis came as a shock to me and did initially feel like a death sentence and even after reading up on it i had so many questions....Thankyou all again for your help and i will contact BLF asap and ask my GP to refer me to a specialist (something he doesn't feel is necessary at this stage) :)

    Ps. Lynne i think you misunderstood, my GP didn't give me 8yrs to live...he said an EXTRA 8yrs if i stop smoking...i just didn't want to be putting myself through the ordeal of giving up something i enjoy if i was going to spend those extra yrs seriously suffering if you know what i mean x

  • OK, scratch that part of my reply as that's the same reason I couldn't have Champix.

  • I realised after, so deleted my post.

    Let us know how you get on.

    Lynne xx

  • Will do and thanks :) x

  • Hiya Kazz5, I got diagnosed 2 years ago AFTER I gave up smoking.. Straight in with very severe emphysema Stage 4. After getting proper tests with a consultant and getting the correct medication I don't feel too bad. The knack is to give up smoking and do plenty of exercise. I intend to live a normal a life as possible and to a decent old age as well.

  • Thanks....it seems i may well benefit from seeing a consultant know matter how 'early stages' it is. At the moment i'm still fluctuating through all the emotions from the obvious 'why me' to the determination of not letting it beat me and everything inbetween including the smoking issue. I'm sure i'll get to grips with it and it helps a lot hearing 'real' peoples stories :)

  • Hi Kazz and welcome,

    I was diagnosed about 18 months ago but no-one told me to quit smoking as I also have severe depression so they didn't really tell me much at all.

    It was only after my last 'flare up' in February that I felt so bad that I decided for myself that I needed to stop smoking so I quit for National No Smoking Day 13th March, I lasted 30 hours but had some cigs in the house so ended up smoking them after breaking two teeth off and losing my bridge in the process. I couldn't NOT smoke knowing I had to go to the dentist to get the roots pulled!

    I promised myself that as soon as I'd been to the dentist that I'd quit the very next day (20th March). I did with the help of an e-cigarette and mini lozenges and have only had one 'slip up' over this past weekend as I had a rough patch of depression...now corrected by my key worker.

    You need more info. to know what stage you're at, your FEV1/FVC% etc. and even then there are people who are categorised as 'mild' who suffer more than those who are 'severe'. A lot of it is getting your head around it and controlling it rather than it controlling you (as someone told me).

    The sooner you stop smoking the sooner you'll reap the rewards. By day 5 I could breath a lot easier and had stopped wheezing completely. I'm also sleeping a lot better.

    Your GP can give you things to help you quit smoking...a lot of people have taken Champix and say that it's really good.

    I do wish they (GPs) would give out COPD leaflets to people who've just been diagnosed as its a lot to take in at the time and almost everyone comes away with tons of questions. Make a list of the things you want to know and go back to the GP...it's well worth it but take no notice of time limits on your life - they can't possibly say accurately and it's just scare tactics.

    (((Hugs))) and good luck,

    Lorraine

    :)

  • Thanks Lorraine, to be fair my GP printed off the info to give to me and he said " i'm not going to tell you to stop smoking because i know how hard it is, but it's the only thing that will slow it down". The next day i made an appt with the nurse re stopping smoking, however these appts are only available once a month and a week before my appt i got a call cancelling it! Another appt was made which is next wk but in the meantime my GP told me our local asda runs a stop smoking service so i went there. By this time i had already cut down by half and i managed to get down to just 3 in an evening whilst using the inhalator for a week, however when i went back a week later for more (2wks ago) he was not very supportive and almost didn't give me anymore but as i told him after over 35yrs of smoking i thought i had done well ! Unfortunately though that weekend i couldn't do it anymore and have been back up to normal again :( I honestly didn't feel any different even when i was down to 3 and as i'm sure you know having depression doesn't help plus at the moment i'm really stressed and worried how i'm going to manage with this 'bedroom tax' and council tax changes and have to go for an interview next week where i think they are going to take me off incapacity benefit and tell me to get a job even though i have copd, fibromyalgia,ibs, severe depression, post traumatic stress and 1st degree heart block.....bloody hell i sound like a wreck don't i lol but i think after reading these replies i really am going to have to try harder x

  • Hi Kazz,

    Try not to worry too much about your interview re ESA switch please, it won't do you any good. Apart from heart condition were almost in the same boat except I'm agoraphobic...not totally, I do go to the GP and psychiatrist when I have to although I have cried off on really bad days.

    My hubby phoned the job centre and told them I wasn't fit to go there for interview and that ATOS had come out to assess me and I got switched to ESA without any probs., well after they put me in the wrong group and I'd appealed they sent me a letter saying they'd cancelled my appeal as they'd put me in wrong group and I was in support group. They still paid me in the meantime though.

    They can't expect you to work with all these things wrong!

    You did do well with your smoking and don't let anyone else tell you otherwise luv! ;)

    You won't feel any benefit unless you quit completely though, it was about five days of zero cigs before I stopped wheezing but then by day ten I wanted to die...that only lasted a day and one cig though...with a lot of geeing on from the guys on here too.

    Sorry, can't help over the bedroom tax, so many stresses...it's hard for us all with this government - they're not in our shoes!

    Please try to keep on quitting hun, it will defo help you but you do need support to get through it.

    (((Hugs)))

    Lorraine

    :)

  • Thanks Lorraine :) It's been a great help reading these replies and i know i have to put more effort into stopping instead of giving myself excuses/reasons not to stop.

    Karen x

  • Hi Kazz51, I understand where you are coming from, I was like you when trying to give up smoking, cut down to 3 a day trying to convince myself that 3 won't hurt but I'm afraid it does, I gave up completely 3 years ago and have felt better with my breathing so you do need to give up to try and control the progression of the decease, I have had a bad winter this year with infections but I know if I had still smoked I would have been alot worse,it is hard but keep trying, I also understand your depression, it is so frustrating when we can't do the all the things we used to do without feeling any shortness of breath,errrrr, stay strong, the sun will soon be shining I hope!!! take care xx

    Best wishes Ju

  • Thanks Ju :) I genuinely was on my way to stopping when i was down to 3 a day just in the evenings, my aim was to cut down to 2 the following week then 1 then none lol

    I ended up having 1 during a fri afternoon and then had a bit of a breakdown because i'd weakened, my thoughts and emotions went out of control but i 'spoke' to a nurse on the nhs quit site and realized it was only a blip and not to be too hard on myself and was back to 3 by monday. Unfortunately this happened again the following fri and my thoughts got the better of me so i'm back where i started 2 months ago! :( But i will do it :) and yes i hope we get a nice summer :)

  • Hi Kazza Im new to this site also,it was your trying to stop smoking that made me want to reply to you.I am 64 have been smoking since i was 15.Was diagnosed 4 years ago c.o.p.d.Over my lifetime I have tried to stop smoking,lost count,even when I had bad chest infections,of which have been many,could hardly walk without gasping for breath,was still smoking. Then 6 weeks ago I had another one this floored me completetely.After 3 lots of antibiotocs and steriods I thought ok why should I keep depending on the doctor to help me when I an not helping myself.So went and got patches and am now on day 10.Don't get me wrong Kazza I am struggling but I can walk without gasping for breath in just this 10 days.This is what keeps me going.I have been here before so I never say I'll never smoke again,but to just walk without feeling so breathless helps me.What we could do is support each other when you decide to stop.I know I need help and support Take care and let me know what you think and anyone out there with help I WOULD BE VERY GRATEFUL thanks.

  • Well it's 2 days since you posted this so i hope you are now on day 12 of not smoking :) Well done!! :) I tried to stop 5yrs ago, lasted 7weeks but it got harder not easier and i caved in :( I will try again soon, just need to get this benefits thing out of the way 1st as i can't do it with all this worry. Thanks for sharing your story and i will let you know when i 'stop'....in the meantime, keep up the good work...you're doing great!! :)

  • Hi Kazz yes it is the 12th day now for 12th night ha ha !!! been tempted a few times but not given in yet.I know this is not the best time to stop when you are stressed,you will know when it is right for you.and your right ,Kazz I also find the longer you persist your resolve does weaken,I just keep reminding myself how it felt gasping for breath.who knows I can only try,the way my memory is sometimes maybe I'll forget I smoked !!!!!!!!!

  • Well Done!!! :D I've been to see our practice nurse re stopping smoking....told her everything that had happened regards me stopping/starting again, she was really nice and gave me a chance (if you 'fail' they're not supposed to give you anything for 3-6 months) anyway she gave me patches to use instead of or with the inhalator. I know i've got a busy weekend of socialising so i've been realistic and set my quit date for monday :)

  • brilliant news well done !!!!!!!!!! first step completed. have a lovely weekend,enjoy your last cigs(have a wee puff for me) even if you feel your not ready Monday there is always Tues,Wed,Thurs good luck hear from you soon

  • I found it very difficult and tried many many times. I think you have to set a date and psych yourself up to it. Get all you aids/ replacements ready and in place i.e patches , gum , sweets, special treats. I found it also helpful to put some money in a tin each day (that would have been spent on cigs) and have a "treat' a few times a day to look forward to ie a special biscuit, a special coffee. I have had an odd slip up and been tempted/ could not say no/ cadged the odd cig . Recently had a pack of 10 over a very stressfull 2 days! will go straight back on track now knowing how cigs will progress my COPD.

    Good luck . You can do it let me know how you get on. Plenty of support here.

    BBFN C

  • not everyone will end up on o2, ,sob wont kill you it will make you uncomfortable and lots with it,not all dr's will tell you what stage you are at. as they don't like to get you into thinking of the end stage , and each person can be very different in the same stage,

    giving up smoking is very hard ,sadly my husband was unable to, tho I smile when I think he was able to go in to hospital and not smoke for days even three weeks but as soon as he came home I could not stop him, tho I tried very hard. please try tho if you can.

    ring help the aged and ask if so one can come out and help you with formds filling in ect. they will come out to you even if you are in your forties and are poorly and can do it due to stress and illness.

  • Thanks johnswife, sorry your husband wasn't able to stop, it must've been hard for you and i think it shows that it's the 'act' of smoking that we are addicted to rather than the nicotine? I keep hearing that copd affects everybody differently and i wonder if i would find it easier to stop if my symptoms were worse....if that makes sense....although i know it makes more sense to stop before it gets to that point. I have a mental health social worker who helps with form filling but maybe i need somebody with a little more knowledge of my 'physical' illnesses to help....so thanks for your advice :)

  • any time. and you are more than welcome to always inbox me with a message if you ever want or like too

  • Like crap. Can't shower yourself or dress yourself can't walk far have to wear oxygen 24 7, can't bend over to tie your shoes your slow, its terrible you catch any and all colds you feel like u can't breath your weak.

  • I'm new to this site and have read every post trying to learn more about copd. I'm a caregiver for my 90 year old mother with end stage copd. She has smoked since age 13 and still does. She refuses to quit. When I took her in to live with me three months ago doctor said she only had three months or less. Guess what...she's doing okay. She is on 24/7 oxygen, can only walk 10 feet, and sits in a chair all day, but she has a strong heart. I have her with hospice, and they are amazed at her will. Just waiting to see what's going to happen. I get a little support from your posts. Thanks.

  • Hi my Mum has recently been diagnoised with COPD unsure what her lung function is I remember doctor said one lung was not taking any air in at all. Oxygen is between 84-90% she has been offered but refused it, she does not eat and does not want to go out, she is in an inhaler and other tablets as she also has heart failure. I am really worried and do not no what to do she is STILL smoking and says she cut it down from 40 a day to 6 but I have bee checking and she is still smoking atleast 25 a day.

    Really worried she is 73 and been smoking since she was 14

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