How fast do we deteriorate

I was diagnosed with severe COPD last January, having been diagnosed so late in the development of the disease, will I only last the 2-3 years websites predict? I have not had any exacerbations or infections (touch wood) but have lung 'pain' all the time and feel that things are not well inside me, but that could just be my paranoia........

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  • Hi Kad,how's your weather going in Perth? Has been blooming hot here on the Gold Coast,don't mind the heat,but hate humidity!

    In answer to your question,don't know where you found the 2-3 years from,but forget it!

    I was classed as severe,quite some years ago,have slowed down in time admittedly,but certainly am still in the land of the living! I'm sure others will tell you the same.

    The important thing,is how you feel,& what you cope with.If you are not having infections,or exacerbations,it sounds as if you are doing well!

    Not sure about your lung pain? Have you spoken to the Doc.about it? Do you have a lung specialist? & have you attended pulmonary rehab?well worth it if you haven't !

    Happy New Year,keep well,& please don't worry about what you read,you know yourself better than anyone! Trust yourself,love Wendells xxx

  • Hi Wendells, lovely here at the moment low 30's which is good as anything over 34 knocks me around a bit. Have mentioned the pain but they dont take any notice, it seems anything I have wrong now will be attributed to COPD LOL, I have seen a specialist,but he just looked at my scan, explained the disease to me, put me on spiriva and seretide and said bye. He did organise rehab though, I am going in a couple of weeks. I guess there is nothing else he can do though, we just have to live with it, but I am obsessed with time, its all I think about. xx

  • Hi Kad Don't say that. I was diagnosed severe January 2013 I still work, walk upstairs about 15 times a day. Don't give in keep active eat well relax. I get breathless but rest and go again. I tell myself it is all worth the effort and each day I can do it is a bonus.

  • Thanks Suzy6, I still work too, but as I said to Wendells, I cant stop thinking about time left, maybe it will pass but I have always been one who 'needs to know' no matter how upsetting.

  • I need to know too and I'm the one who does the worrying in my family but I'm training myself not too. We will keep going together. Keep in touch

  • And fifteen years on..............I am on oxygen 15 hours a day but have only one or two exacerbations a year, love my life go out most days, walk quite a way with my oxygen in my rollater, worked until I was 68, I am 71 now and I go away quite frequently, either to stay with my daughter or on holiday with my husband. Don't take any notice of websites (except this one) and just carry on only at a slower rate. Keep smiling.

    Carole x

  • Hi Kad,

    Welcome aboard one of the best clubs in the world! Here you will get loads of support and advice from some wonderful people. Go for it kiddo! Pulmonary Rehab is very good, even if we are very limited! It is as much mental thing as a physical thing, so courageous thinking required! It worked wonders for me and I have kept it up at home!

    Eat healthily, think positive! :-) Perhaps run the lung pain past a consultant? Keep well and happy,....Happy New Year there to you and your family.

  • hi kad21 i to was diagnosed last january moderate copd and used to hate exercise but have joined a gym and just walking on a treadmill and doing rowing machine and keeping active has i can i can honestly say i feel much better

    i know you are worried about how long you have left has i was really sceared but in time you should get used to and accept it because this is not a death sentence

    Get has much knowlege has you can about it and dont look at other sites has this is the mistake i made we have all done it

    keep to this site has people here are very kind and helpfull

    good luck

  • Hi Kad21. A lot of us Googled COPD and scared ourselves silly with the 2 to 5 year thing. I was diagnosed 21/2 years ago. Straight in at very severe. No warning either. I still work part-time, drive, go shopping with my partner and do most everyday stuff. I just take a rest when needed ( normally a couple of minutes to get breathing properly ). My other half has been ill recently, pulmonary embolism of all things. As she was in bed most of the time I decided to count how many times I did the climb in a day. It turned out 19 times so I was quite pleased with myself. It's my opinion that keep s active as you can and don't let the blighter beat you ! :)

    Just to add. I too think about time and I intend to reach 90 at least. I am 63 now. I also think about time I would have had, or not, if I hadn't stopped smoking when I did . That was before I got diagnosed.

  • Well my husband has severe Copd but has remained pretty stable for sometime. He is slower and he has days when he is very short of breath. The key is stopping smoking, keeping as fit as you can and enjoy your life !

    I would advise you go back to the doc re: the lung pain - my husband does not have that unless he has an infection. Ask for a referral to pulmonary rehab which is a course of exercise and information which is a fantastic help to give you some control.

    Take good care TAD xxx

  • Hi, Glad you have joined us. I can only add to what others have said. Try and forget about time I am sure we will all know when things are getting much worse and then maybe the time to ask. If you feel well (no infections) the P.Rehab is wonderful, apart from teaching you how to stay healthier and manage your condition you will find that being with other people with the same or similar conditions and having a laugh with them is the best medicine of all.

    PT xx :)

  • Hi Kad, I notice a lot of responses have quite rightly referred to slow down a bit. I have found pacing yourself is main thing. If you used to do A, B & C in day, target yourself on A to start with, then A (+B if you feel up to it) etc. It is about 10 years since I was diagnosed, admittedly after a lifetime of severe asthma. On advise of doctors I stopped working for 5 years (in late 40s) and despite all sorts of further problems with lungs and bones I returned to work some 5 years ago (20 hours per week) and since last September have taken this to 30-35 hours per week. Take each day as it comes, concentrate on the things you like and enjoy yourself. Pulmonary Rehab is a must have, I am sure it is what turned me around. J

  • Hi

    I was late in being diagnosed, 2006 aged 61 lung function 34% now 24% recently been on a pulmonary rehablitation course, on 2 lpm Ambultory oxygen.

    Still go out every day ,being single I still do all my own washing cooking cleaning ect.

    You just have to change your pace do not worry to much and remember being short of breath is not all ways harmfull

  • I'm at it again, googled BODE and calculated, not giving me much hope it came out at 52 months!

  • Lung pain could be anything and you could mention this to your doctor. Usually, though, this are muscle pain, not funny, I agree, but they eventually go. Take it gently for a bit, then dos some gentle exercises to strengthen all these muscles. Hope you feel better soon How long shall you live with it?! I had my illness diagnosed n 1994! I'm NOT a ghost :-) Happy New year 2014! Make the most of it and take some exercise1

  • Yes thank you Helingmic, I know everyone is different, but just to hear that it is possible to live with this for some length of time is very reassuring and positive, Happy New Year everyone, and many more of them xx

  • Kad,

    If you do feel you are going to die very soon (?!?!?!) I would advise you that you take up something that you really love, be it chess, archery or any really good hobby. Develop a passion for it. find a club where you can develop this passion, so you can share it with others, enter a competition or two. And tell me in five years time how you are getting on! :-)

    P.S. I started chess ( I knew the moves since I was five years old, but had let all this lapsed for many, many years. I took it up again in 2003. I found an internet club which was then in its infancy. Today it has become an international chess club. I exchange ideas with many who play with me. I even practised Portuguese when I had a go at learning it. I'm not a champion, but I want to become better at it. I did deep into the many books about it. I lose lots of games, but then thanks to learning from my mistakes, I have progressed into winning a fair amount of games too. I hope to reach a good standard when I am 93.

    I know a friend at the church coffee morning who is 93 and still plays. He was an inter-county champion. He still plays every Monday. That's my passion!

    Have one too! Happy New year 2014!

  • Hi Kad21 and welcome to the site.

    Ditto everything that's been said on this site. I was diagnosed twenty years ago so either I'm a cat or your Google is wrong!!!

    My advice is to get out of breath at least once a day to give the Tubes a workout and eat as healthily as you can.

    I've recently bought myself a Pedometer (two for a tenner in ASDA ) and have set myself a target to walk each day, log it down and try to better it over a week or month.

    As people have said, get the lung pain sorted out, could be Google Stress!!, and cheer up. I'm 66 and active enough and there are Folk a lot older than that on this site.

    Also phone the Helpline if you're not getting the advice you think you need. X x x

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