living with COPD

I was diagnosed with COPD 3 years ago and am on various inhalers daily. what I would like to know is other peoples experiences with this disease, other than stop smoking. things like what are good forms of exercise to do, what foods to eat, I have visited various websites and most of them are American sites so information is quite different. my lung function test is 67% is that ok or not as we are just not getting the information that we need from the gps and nurses so does anyone have some advice and experiences they could share with us please.

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  • A lot of us on here have done PR (pulmonary rehabilitation) which is something that is usually arranged through your GP, COPD Nurse, Consultant etc. Depending on where you live there are also Breathe Easy Groups and of course here we have the wonderful BLF helpline and if you are not sure about anything you can ring the nurses on that and they will talk you through almost anything you want to ask.

    Anyway WELCOME pull up a chair and join in (must warn you though you need a sense of humour )

    Janet

    xxx

  • hi janet thanks for your kind words and advice am finding this site really helpful and am taking on board what all are saying and will probably give the BLF a ring to have a chat with them.

  • thanks janet for your kind welcome and advice my wife and I are still plodding in the dark so your advice will be taken on board

  • Top tip - avoid the American sites and investigate the BLF website for information. For all the little twiddley bits you can do no better than this site. It is probably easier to ask a specific question and that way you get tailor made help. And welcome :)

  • Hi Sid

    As Jandan says, pull up a chair. Your best bet, as again Jan says. is Pulmonary Rehabilitation. The problem is that with a lung function of 67% you may be borderline to get on one of the courses. It won't hurt to ask though. If you want to know anything about COPD just ask in the question side of the blogs.

    Best regards

    Bobby

  • Hello Sid48, and welcome on board ;)

    Any specific questions or concerns, then a call to the BLF help line nurses 03000 300 555 who will soon put your minds at rest.

  • Welcome, and I can't agree more than to recommend calling the BLF and visiting their website. A lot of the websites out there will only make you more concerned, and the reality is far from their gloomy take on things. Look forward to hearing more from you in the future.

  • Hello Sid and welcome. This is a void site even though there are a mixture if topics going on, but if you have questions there are plenty of us that are happy to help in any way we can.

    Lynne xx

  • That was a good site lol xx

  • No Lynne you were right this is a bloody great void that we all disappear into as often as we can :D

  • ROFLOL tena lady moment .....

    (I stocked up for the weekend) :d

  • I am pleased that this has been posted, my GP has given me no info on my lung capacity, just told me I have COPD and sent me away with a nebuliser. I do have to return to see him in just over a week, so this will be a question that I ask.

    Also will ask if there is anything to help with my choking probs.

    Good on you Sid, Sorry I cannot help at this stage as not long been diagnosed. But everyone on here has such gr8 advice, giving me more to ask when on my next surgery visit.

    When I was is hospital I was told I have a shadow on my lungs, BUT my GP tells me on my last X ray my lungs were clear. I believe he should look into this, even give me another X Ray. He just brushed me off.

    I am pushing myself to excersise at the moment, I am afraid if I cry off, then I will end up sat in a chair just looking out of the window and watch life pass me by.

    Good luck, and for both you and me being new, this site is so warm, helpful and fun.

    xx Ros xx

  • Welcome Sid as recommended the pulmonary rehabilitation course is your best bet. You will learn all you need to know about managing your condition, using your medication correctly, breathing exercise and physical exercise, diet and nutrition, managing depression, anxiety, so much more, too much to list really, the pulmonary rehabilitation course run by the NHS at your local hospital is probably the one to go for as they will have more medical professionals giving the talks and advising on how to manage your COPD, (rather than a community run one) at least that would be my own recommendation. Your GP can refer you.

    All good wishes.

  • Try to eat healthy food,plenty of fruit and nuts,I drink lots of Manuka honey it helps build up your immune system.Spend time doing the things you enjoy, get fresh air and exercise whenever you can! :)

  • hi sid..was that 67% lung funtion after you took inhaler or before at your test and was it 67% 3 years ago or now

  • hi I am assuming its 3 years ago as have not had another function test since I actually only found out my lung function a few days ago by accident as a nurse accidentally told me over the phone so my gp and chest doctor at the hospital never told me. So not sure what it is now. information from the professionals seems to be withheld so thought I would benefit from joining this site and gaining knowledge from the real people who live with this condition. hope this answers your question.

  • i think its bad for information to be with held from you because if your lungs are not good then you should be advised on things like giving up smoking ( if you smoke ) and excercise

    i cannot beleive your gp has not advised you on these things 3 years ago to help you... anyway 67% lung funtion i think is not that bad and im sure there some people on this site would like to be at 67%.

    You have come to the right site has people on here are very kind and helpful

    i wish you all the best

  • I'm back again. You might want to consider joining the BLF as their magazine and other publications are really useful and informative. I go to the gym for exercise and do about 45 mins cardio vascular each time using the treadmill, bike and rowing machine. Having recently had a chest infection though, I will have to start all over again.

    If you lung function is 67% now, that is pretty good. Mine was 55% when last checked a year ago. It should be done at east every year, more if you are severe.

    Let us know how you get on.

    Lynne xx

  • with a lung function of 67% you have a long way to go before it rules your life as it does for many of us(mine is 21%) .Having been diagnosed more than 10 years ago I would say the best advise I can give you is exercise, exersice and exercise some more especially cardio vascular. Keep your eye on this site as you are sharing knowledge and experience with others. Good luck for the future

  • hi winebuff, may i ask what % you were diagnosed at 10 years ago or what stage if you can remember

  • hi Music. I cannot remember what it was 10 years ago, but 5 years ago when I had part of my right lung removed due to repeated repeated collapse I was 48% and was quite happly walking 18 holes of golf three times a week. It is only in the last year or so that I have gone downhill fast

  • now you are 21% can you still get about much or exercise and are you on oxegen

    really sorry about the qustions but trying to see what the future has for me has i am age 56 and 62% when diagnosed in jan but i know we are all diferant

  • music not everyone's lungs will deteriorate in the same way, it is very much an individual thing.

  • thanks blakey think you could be right because not sur but i dont think everyone is on oxegen even at sevear stage

  • oxygen only prescribed if blood oxygen levels are low, as you say not everyone even with severe lung damage will need it.

  • Exercise has become difficult if it means moving my body mass(only 11stone) but I can use the exercise bike. I am afraid that breathlessness overtakes your life, but you have to find ways of not letting it rule your life. Getting about is hard but you must try, I used to feel self conscious going out with my oxygen on until you see that nobody notices.I do not want to become house bound so I getting a hoist fitted to my car and will then buy a mobility scooter.

    It is hard for the sufferer but I sometimes think that harder for my wife as her life also changes so much. I have gone on a bit but to finish keep positive and do as much as you can and DONT GIVE IN. I am 70 so there will an age factor as well

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