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British Lung Foundation
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Any help explaining COPD to me would be helpfull

I was diagnosed with COPD January this year. i have inhalers but dont feel the benifit.

I also dont get support from anyone and new to this i dont know who to contact etc.

Any help would be much appreciated, also help for me to understand more about the condition. thanks Kay

17 Replies
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Welcome to the group Kay :) You will find lots of useful information and answers to your questions on the British Lung Foundation website. If you click on 'Home' at the top left of this page ......... the world is your oyster.

Don't let the diagnosis of COPD get you down :) I was diagnosed 11 years ago and I'm still here ! and able to get about quite a bit, despite being on oxygen 16hrs per day.

If you're not feeling any benefit from the inhalers go back to your gp and ask for a referral to a respiratory specialist (you don't mention whether you have already seen one).

I'm sure there will be others along here shortly, to offer their support for you along with lots of handy hints and tips about coping with this condition.

The best thing to do ......... stay calm, and carry on :)

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Hi Elian

Thankyou for your reply,, i have been to the nurse at my surgery only and she checked my flow etc,, i was at gp last night explained about the inhalers and i to get spirometry checked again with the nurse in 2 weeks.

at the surgery

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Hi Stitch

Thankyou for your reply.. I have the blue inhaler,,also spirva one( odd shape almost round) i take in the morning,,and brown steroid,, one doctor says to stop using the brown and another says stay with it,,, confusing lol,

to be honest i dont think i have really accepted my diagnoses as prob as i am frightened to,, sounds silly really

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Hi Kay

So sorry for your recent diagnosis, its always more difficult initially but as time passes and your become more practised at managing your symptoms, things will improve.

elian already mentioned referral to respiratory consultant for thorough checks and do go back to doc if current medicine is not working for you.

You may want to :-

--- Ask your GP or consultant about attending a pulmonary rehabilitation course**, this will give you all the tools to help you manage your condition more successfully,

---- BLF's page - Living with COPD:

lunguk.org/you-and-your-lun...

---- Send for the free dvd - living well with COPD

lunguk.org/campaigns/world-...

----- Check the Pulmonary Rehabilitation Video link on previously posted:

blf.healthunlocked.com/blog...

Hope some of that information is helpful to you Kay.

Keep in touch and let us know how you are getting on.

Tru

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Hi Tru

Thanx for the reply and your help

what i have not mentioned is i also have fibromyalgia and recently been diagnosed also with disc prolapse,, now that is 3 lol,

i am a fighter and wont lie down to any off them if possible,

so with all my disabilities i do need to focus on what and when i can do things,, hard as it is at times,, keep smiling x

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Hello Kay and welcome

Like others here I too have COPD and was diagnosed 7 years ago. The PR course that Tru mentioned will also give you the social side as well as the all important information and exercise side. Have to say I get very angry when I hear people are diagnosed then left high and dry with little or no information or direction to other sources. You might consider calling the BLF help line and asking about any Breathe Easy groups operating in your area; they tend to meet once a month and you will be in contact with others who have chest conditions either the same or different to your own. I must say I learned more from others n PR courses or from the BE groups than I ever did from the medics in the first instance.

You might want to keep a notebook of symptoms or any questions you want to ask of a doctor or specialist as it is so easy to forget when you go - says she from previous experience!!! You could also ask if you can have a "spacer" which will help get as much of the powder into the lungs as is possible - preferably the handbag size as I personally find that easier to use than the balloon type!

Don't leave it too long before you go back to the docs Kay especially if you are feeling no better - do let us know how you get on

Mulie

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HI Kay,

Like you, i was diagnosed recently ( 2 years ago) and until coming on here in the last few monthhs i was just as confused - the BLF site and these blogs are the best way to get information. I am on 3 inhalers and 2 tablets a day and felt i was not getting any benefit - in fact i also found that if i got out of breath resting was a better option than using Ventolin until my doctor told me to get a nebuliser. Sadly you have to buy these as they are not available on the NHS,(in my area anyway) but i now find i am controlling it much better. I wasn't shown until very recently how to use an inhaler properly and wonder if that is why i was not getting benefit. The nebuliser gives almost instant relief and has changed my life.

I keep my eye on these blogs as they are personal experiences from people who have the same condition and everyone who posts on here gives me the motivation i need some days and because of these blogs i have learnt i may be entitled to DLA and a blue badge, i would never have applied for either without the support of those who blog on here.

Keep your eye on these blogs Kay, they are a valuable source of information and support.

Good luck xxxx

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HI kay as have been mentioned the ventolin is just for when you get a sudden attack of breathlessness and its far better to use a spacer as suggested, cos then all the medicine goes straight to the lungs, whithout one a lot is wasted in your mouth. Spiriva is really brilliant, is a bronchodilator and keeps your airways open for until you take it again the next day, you should take it the same time every day tho. dont know what the brown one is, not seen a brown one, unless its another bronchodilator to help keep airways open also if its a steroid one should be good for you. Has your doctor referred you to a respitory consultant - cos you should be referred to one, they can do tests to make sure you are on the right meds, arrange physio if you need to do breathing exercises when you get short of breath, plus, sometimes your lungs get full of gunk and a physio can teach you how to get rid of it, also as i think Tru suggested try and get on a pulmonary rehab course, as i am just starting one and they can improve your breathing levels and if they work well and you stick at the exercises when the course is finished you should find you feel stronger and if you take your time and do things steadily you can do more without geting too breathless, also the help lines on this site will answer any questions you may want to ask they are brilliant and will even phone you back if need be., good luck and i hope you soon get all the help you need, kind regards ljc x

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Just to say I was prescribed Ventolin 4 times a day specifically, plus as a reliever. No side effects regards

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As a long term chronic asthmatic, I used to use a brown inhaler. It was seretide 250 I believe, but the seretide 500 is in a purple (numbered) wheel. HTH

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Or was it Becotide!

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Hi Stitch thanks for the Link, it was very useful, i just had never seen a brown inhaler before, knew about the others, good to keep learning tho :-))

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Hello there Kay,

I don`t think I should offer you any advice at the moment, I think you have enough to be going on with. I just want to say welcome to the group, you will find we are a friendly lot and there will always be someone who will answer your concerns and questions and of course you can aways contact the BLF helpline.

Stay positve

Regards Linda.

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Hi All

We all learn together as the condition changes but our friends stay with us

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Kay7 my husband suffered with COPD for over 7 years, all i can say is try and speak to someone from the lung foundation as soon as you can. This is a horrible illness but can be manageable with the proper help and medication. also go and see your local CAB and get the appropriate forms for benefits that you are entitled too , I wish you all the luck in the world xxxxx

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hi all

I would like to say a big thankyou to you all on your answers and replies.

New to all this and still learning.

Sorry not been on here for few days but bit poorly

Thanks again everyone and keep in touch xxxx

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Hi,

I have just been diagnosed with COPD having been unable to get my breath and feel that I am being strangled since last October. I have had asthma inhalers for years which didnt really do anything other than the blue one. I now have my blue releiver inhaler and a peculiar one Spira. I still dont fell the benefit of the Spira and have had to have repeat steroids (predisilone). I really dont understand how I can be ok breathing one day in \October and then suddenly not be able to get my breath from then on to this day and be so debilitated ! So you are not alone

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