i have COPD get no help other than inhalers

hi all, i was told i had COPD a while ago after being told it was ashma for years.....

i have had had spirographs & lung function tests but have not been told anything about how bad mine is (my hospital had put moderate/severe on her form)

i am more or less housebound as find walking too much....

at min i'm on esa benefit but am still being told i have to attend back to work programmes all the time....

can i get any help from anywhere ????

many thanks in advance

14 Replies

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  • Hello Lorraine, you mush go back to your GP & ask to be refered to Pulmonary Rehabilitation. There you will learn how to manage your condition & exercises to help you improve your mobility. I suggest you visit the BLF web page ( link at the top of the page ) also call the helpline 03000 030 555 they will be able to answer any queiries you have

    Best wishes

    Jo :-)

  • Hi, if it's emphysema you have, I am very surprised that you are only on inhalers if your condition is moderate/severe. There are a number of other medications available, depending on your condition/severity of your condition. You need to go back to your doctor asap and ask for a full explanation of your diagnosis and whether there are any other medications that can help you, As regards work, I was still working when I was moderate/severe, but everyone is different in how their condition affects them. If you are more or less housebound because of your condition, it sounds as if you would qualify for DLA mobility element, but you do need to check things out with your doctor. Don't put it off!! Libby x

  • Hi Stitch, I also have Uniphyllin tablets, which helps open the airways (a bronchodilator) and carbocisteine capsules which thin mucus and therefore keep your airways clearer. I have ventolin (useless), Symbicort 400 (brilliant) and Spireva (never been sure if this is of any use or not!). I also have Lorazepam which is only to be taken in case of emergency when my breathing gets so shallow that it creates a panic situation, thereby making the breathing even more shallow. breathing in more than out and making the lungs unable to take in any more and becoming over inflated. It's a fast acting muscle relaxant (amongst other things) and slows your breathing. It was recommended by my consultant but it was a battle to get my doctor to prescribe it as it's very addictive and is an anti anxiety drug. I only take one under my tongue when absolutely necessary but is invaluable to me. I have met other emphysema sufferers who take different medications than I do and as we have the same condition, so I don't know why that is. Libby x

  • I agree with all jojam has said, time to take hold of the reigns and steer your life in the direction you want to go. Get in touch with people and programmes that are going to help you live with and manage your condition best.

    the PR programme along with stopping smoking are going to be the two most important things you can do for yourself. As suggested phone the BLF helpline 03000 030 555 between 10am and 6pm Monday to Friday.

    Don't delay on putting the wheels in motion, doing so will help you see your way forward.

    Also ask your doc if you can access a cessation clinic concerning not smoking, you don't have to make any decision about stopping straight away but you can chat to the nurse about the options available to you to help you toward that goal.

    Good luck with everything.

    Zoee

  • Good advice from everyone else. Just one thought, it's clear from your other post you still smoke.

    Right or wrong, increasingly the medical professionals will help those who help themselves, I'm afraid. This applies more and more to people with health problems caused by obesity, drug abuse and alcohol. Smoking is no different.

    My GP is good, but was clear that he expected me to do my bit too. For COPD that was to quit smoking (which I had just done), do more exercise and lose some weight. I am doing the last two. One year ago I would not have believed that I could do half an hour on the treadmill and 20 minutes on the bike at the gym.

    I still get breathless, but not as badly and I have had no infections since (touching wood here!). So I'm trying to do my bit of the deal with my doctor.

    I wish you all the very best.

    Lynne xx

  • Well said lynne, you can't just sit back and expect others to do the work for you. You have to do what you can to help yourself too. If the people around you see your doing your bit then they will tend to want to help you more.

  • I agree thoroughly,taking meds is one part of it(a big one) but there are so many ways to help yourself also,so well worth doing,its your body,your life, try and respect that.Make the most of it,and as Dall says, if people see you are trying,they will be a lot more responsive.

    Stop smoking no1.! excersise is so important also.Try and join a pulmonary rehab group.Which in turn will help you lose weight.Good luck with it all!! Everyone reacts differently to meds.Libby is not sure about spiriva,I also use that,along with onbrez,& symbicort.Ventolin does nothing for me either,but others swear by it.I personally can not go past spiriva,it made a great difference to me!! Do talk to the Doc. though,& never be scared to ask questions.

    On a personal note, I would work,for as long as you can,it was a sad day,the day I had to admit defeat,I was very severe by then,Good luck with it all,

    Wendells xx

  • am interested in how onbrez helps you - I may be able to get rom chest consultant - on waiting list. Thanks. xx

  • am interested in how onbrez helps you - I may be able to get rom chest consultant - on waiting list. Thanks. xx

  • Hi Julie,heard so many good reports about it,asked the Doc. whom was happy to put me on it.Because of it, I had to go off my oxis puffer,as they do contain some of the same.I did love my oxis,I must admit,being able to use it, when in trouble also.(as some use ventolin,thats useless to me!)

    Anyway, the first 2 weeks, thought it was the wonder drug,never felt so good!! However, as time went on,maybe lungs used to it??It evened out.

    Still taking it, nearly 12 months later,have an appt. with resp. specialist, at the end of the month,have been last week for all the blood tests,and to the lung lab.for complex lung tests, so will see what he wants to do with me,when I see him.He said he wanted me on it for 12 months,before he decided!

    Hope this makes sense to you!!

    Good luck with everything,

    Wendells xxx

  • Ps.Its taken once a day,after spiriva inhaled, apparently works well together!!

    Have had no side effects either.

  • good luck at your appointment. let us know how you go. thanks for the info, will ask my doc. xxx

  • You have had some great advice here and I hope a visit to the GP serves you well xxxxx

  • With regard to your benefits; it is "normal" for the Benefits Agency to reject claims and say you are fit to work.

    Many people accept this even though it is clearly a wrong decision.

    My DLA claim (osteoarthritis) was rejected, looked at again and rejected, appealed and the appeal delayed for "further reports" - this was a Benefits Agency doctor visiting me one Saturday morning! He asked some questions, asked me to walk 10 yards before saying "It's obvious that you are disabled!"

    You do need to be persistent and find some help to complete the forms, CAB or your local welfare rights charity are a good starting point.

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