I was diagnosed back in April with moderate to severe copd I'm still none the wiser was just told by my go if my breathing got any worse to make an appointment right away and she put me on blue inhaler and spiriva and that was it never even told me how to use them . The only test I had was a lung function test no other test was offered , and I found out in June that they have a copd clinic at the surgery everything else I have had to find out on the internet any one else had to find everything out for themselves .

16 Replies

  • the same thing happened to me tell doctor you need to go on a pulmonary rehab course x

  • Hi

    Ask you GP for a referral to attend a Pulomonary rehablitation course,

    Which is one hour exercises plus one hour education.

    It will boost your confidence and teach you our to controll your condition.

    I would restrict you Internet, to "nhs choice "

    As there is no cure for the condition. GP's can be at a loss. Each one of us is affected by the condition in a different way. Even breathlessness comes in varying degrees. The only common factor is we al use at least three similar inhalers.

    One long acting, one long acting with steroids, and one reliever.

    There is added medication for increased mucus,.

    I have a home rescue pack, Antibiotics and steroids.

    Some like my self will have medication for secondary illness related to the lung condition.for me it is Anxiety.

    There is no one size answer, ask any question, and some one will be able to relate and offer some advice.

    BLF helpline is a good choice for specific questions, 03000 030 555

  • Thanks I've already asked to be put on one back in June but will have to wait till one is available in my area I trying to walk as much as I can I can't do much else even hoovering the house is a strain

  • Hi carol, we have a asthma/ copd nurse in my surgery who is brill if u can get in to see her, I only see the docs now if I really have to as I find them quite dismissive, have u been refered to a consultant, u should have if ur moderate to severe copd if not push to be they will help u more. Take care x Sonia x

  • Thanks I made an appointment for nurse but had to wait 6 weeks to see her but did eventually but was told everything was ok and come back in 6 months for my next check up

  • Carol you are making all the right moves to help yourself, and coming into this forum is a good move too. You will learn so much from reading the posts of others and you can always ask questions if anything particular is troubling you

    It may be unfortunate that you have not received more help than you have, but you can learn SO MUCH about your condition by researching could even end up knowing more about COPD than your GP's :) :)

    You main aim now is to slow the progression of the disease..... re exercise, good diet, lung clearance, flu jabs , and more exercise :) :) it CAN be done

    Love Sohara

  • Thanks just looking for a bit of reasureance at the moment feeling a bit down because can't get things done Like I used to

  • Don't worry carol we all feel that on lots if days. Every doctors are different but I would of thought as a severe copd u would c one, I might be wrong. Some one here might have better answers for u. Take care Sonia xxx

  • Sorry to be a nuisance but does your gp refer you to a consultant because I took it you only need to her and only if anything changes

  • Hi Carol If you follow Stones and Soharas advice it will stop the progression. I was knocked right back when I was diagnosed severe in January 2013 but all the good advice and help on here has helped me stop progression. I'm on week four of my rehab, I waited 19 months for the appointment. I exercised at home with some exercises I copied from here and now with a FEV of 32% I'm having to do my exercises longer than anyone else, would you believe, because I don't get out of breath enough. Good luck, take care. We can definitely help ourselves.

  • Suzy is so right will amazed how much better you will feel once you start to exercise...if you read some of the marvelous improvements people on this site( who are at an even more advanced stage of COPD than you), have made , then I am sure that you can have a long and healthy life ....

    NEVER give up girl

  • Thanks will look for the right exercises that I will be able to do and I will never give up v

  • this is the sad thing about the world right now no one knows if it is due to the fact that we have an aging and ailing population or what the thing is 1) the medical staff does not seem to be able to cope and 2) they assume everyone has an Internet link and they are able to do their own research. This is wrong in the respect that people would misdiagnose symptoms and quite (in all innocence) leave things to get worse before they or someone close to them eventually calls the doctor because that person is worse. Another thing is with all appointments take with you a small note book ask questions write down answers and keep in touch with this web site and the BLF also try to find if there is a Breathe Easy group near them. ;-)

  • oh god

    its a sad fact but best get use to the idea that most of our doctors are rubbish

  • Hey Carol, I was diagnosed mild COPD in June. it's not fun. But I've learned so much from the people on this site - so many tips and helpful suggestions. Exercise and salt-pipe are the two things I swear by. I swim every day if I can manage it. Stay positive - I really believe it makes a difference. Good luck!

  • Oh dear Carol, ask to be referred to that COPD clinic! Ask to be referred to a consultant pneumologist and a pulmonary nurse; the GP must do this. The socialist consultant and nurses will be able to enlighten better than the internet.

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