Another Newbie

Hello everyone. Like a lot of you I was fairly recently diagnosed with mild/ moderate COPD, after about a year of visiting my GP because of a linger on/off cough, which was diagnosed as viral as it didn't respond to Antibiotic treatment. I am 69, female living between UK and Spain, a life long non smoker and to my knowledge have not had any chest infection prior to visiting the GP, so guess I must be a victim of passive exposure or a virus that has created my condition. I am currently on Spiriva capsules with Ventalin as required, which controls the coughing spasms which are always non productive but nothing seems to relieve the SOB on the slightest of activity. Spirometry test results they tell me fall within normal parameters but my lung age is 87!! which to me doesn't seem normal, perhaps some of you know differently?, all other non-invasive tests show normal results. Since April I have had three exacerbations each resulting in my GP sending me by Ambulance to A&E. I realise the condition can't be cured but I don't feel the meds I am currently using are that helpful in respect of life quality. I am due to see my GP again in a weeks time, does anyone think I should press for a referral to a specialist? Or should I just carry on trying different meds in the hope that things may improve if and when the GP hits the magic formula. I walk my dog each day for about half an hour although the progress is very slow and I meditate to help me come to terms with my life changes. From reading the posts there is a wealth of information out there in the forum, so any ideas folks or words of wisdom. For someone struggling to come to terms with this condition?

20 Replies

  • Welcome! You will get loads of useful information from this site. Try not to google too much because some of the sites are rubbish and can scare you senseless with misinformation!

    With regards a referral for specialist. Current thinking is only need to see consultant if GP cannot control. In my case I am now seeing a consultant following a severe flare up last winter that was difficult to "get on top of". However I saw numerous consultants prior to diagnosis and wasn't impressed or helped by any of them! It was actually my former GP who diagnosed me. And for me spiriva has helped loads. I say this because you might not be any better off with a referral to consultant.

    However in your case having to go to A&E 3 times since April seems a lot. Do you have a rescue pack at home? I.e. Steroids and antibiotics. For when you can't get to GP. Some gps won't do this but I have been fortunate to have a rescue pack and it is invaluable.

    I also have a nebuliser at home - again some GPs won't agree to this but for me it kept me out of hospital and I feel I have more control over my situation.

    Possibly because you are new to all this GP will not be keen for you to self medicate because you won't have the awareness needed to make wise decisions.

    One thing you can ask for is a referral to Pulmonary Rehab. There you will learn lots about your condition as well as looking at your physical fitness in a controlled environment.

    Please continue to keep in touch and ask as many questions as you need to. Also read old postings which are a mine of useful information.

  • Thanks for your reply Bevvy, no I don't have a rescue pack, or nebuliser GP says if I feel things are deteriorating my first call is to her or the call out GP out of hours cover. I know there hundreds of us out there and most are coping well with the life changes of COPD, so sounds like I need to get my head around it, perhaps I am grieving for the life I once had, no more dancing for me, and walking and talking at the same time is now impossible but as they say that's life so it has to be onwards if perhaps not upwards!! I will explore the rehab programme nothing to loose. Thanks again

  • I would recommend everyone ask their gp for a referral because of my own situation .....I also was given lots of antibiotics for over a year by my gp and only a few days after finishing a course of them i was rushed into hospital because my sats were in the 70s.....I was told 2 weeks later that a lung transplant would be the next course of action for me

    If your not happy with whats happening ask to see someone and get a scan

  • Thanks Mandy6513. I guess compared to your situation I am doing not too bad. Will probably ask for the referral, as currently I really don't feel the GP can or perhaps is going to do much more

  • Hi I have never heard of copd being caused by a virus? Other lung diseases but not copd. I don't understand how you can be diagnosed with mild/moderate copd yet your spirometry tests fall within 'normal parameters'? It is contradictory and doesn't make sense. All the doctor means by saying your lung age is 87 is if you were that age you wouldn't be classed as having copd. I was told at 54 my lung age was 89!

    If I was in your shoes I would be asking (no - demanding) a CT Scan. This is because constant chest infections can be a sign of Bronchiectasis and not copd. This would show on an x-ray. I have heard of a number of people diagnosed with copd (including a friend), who have repeated infections and are then diagnosed years later with Bronchiectasis instead. I am not saying this is the case with you but it does need checking out via a scan. x

  • Thanks coughalot2 For your feedback, I am now more determined to press for a referral when I see the Doc next week. Perhaps I am in denial but I feel I need more specialist advice and as you are a Man U fan you obviously know what you are talking about!!

  • Well I wouldn't say that :) Good luck with getting your referral. Try first pointing out that repeated infections could be a sign of bronchi and a CT scan is needed to rule that out. Let us know how you get on.

    Oh and a look at the NICE guidelines for copd. Just google it and they come up. x

  • Cheers, will do that

  • That sounds like a tough time, know how you feel, been there.

    Yes I'd ask for a referral, and would expect/hope for a CT scan for clarification.

    COPD diagnosis seems a leap of faith for a non smoker with 'normal range' spiro. They tested reversibility for asthma, too?

    Have you got a copy of the results? Ask for the print -out , it's yours by right. Insist if they try to duck.

    You don't mention X-ray?

    In addition Spiriva is not a drug on the mild/moderate stage on the UK's NICE 'pathway'. Is it being tried because you didn't improve with other inhalers?

  • Hi Thanks for your response to my post. I have had three X-rays which all were normal and showed no change. As well as an ECG which was normal. Not sure about the Asthma test. I thought it might have been that as both my Mother and Grandmother suffered from it, but the Doc says no. Spiriva is the only inhaler I have been given, apart from Ventalin, the Doc says she believes it is the best powder inhaler for COPD, and said in general it is a successful treatment. Last time I saw her she also prescribed another inhaler twice a day Steritide I think it was but not sure it was a green circular dispenser but it made no difference what so ever after six weeks hence my appointment next week. I will press for a referral, as I feel I need more investigations before I am totally convinced I have the right diagnosis. Thanks again

  • Hi Soulsaver think I have done something wrong here as my reply seems to have got detached somehow but can be seen below, never was much of a techie!

  • I see it OK.. so you're better than you thought. These tests/results are in the UK?

  • Yes, they were done in June. Thanks again

  • Hello Rosalada,

    Sorry you're having a bumpy ride, but welcome here.Lots of wise words in these replies, and I agree. There's something about your story which isn't typical COPD and it's worth getting it checked out.

    Good luck, Sue x

  • Thanks Sue, everyone has been so good with all the info and good wishes. It has spurred me on to really press for a referral next week thanks again x

  • Some terrific replies there Rosalada so do get a CT scan arranged as that seems like the next step. Good luck to you and welcome to the HU family. Xxxxx

  • Thanks Sassy59 everyone has been fantastic there really is a wealth of knowledge within HU. I feel so much better already and much more confident about asking for the referral xx

  • Hi Rosalada, it may be inflammation which is causing the breathlessness and you might need a "combination" inhaler, e.g. Symbicort or Duoresp. They have a steroid component which will reduces inflammation and a bronchodilator which opens your airways.

    You don't say which AB you were taking. If it was amoxicillin which is often prescribed, that AB doesn't work well for everyone, and there is another called Co-Amoxiclav which combines the amoxicillin with clavulinic acid and this can make it work where amoxicillin alone doesn't. I take Co-Amox and it works for me. However another point is that if your cough is productive you should take in a sputum sample for analysis so that the correct antibiotic can be prescribed for whatever bug is in your lungs. If you haven't been asked to do that, its quite possible that you haven't been prescribed the right one for your particular cough.

    Sounds like you need a medication review and if your GP won't help, ask for a consultant referral, and if that isn't possible, then a second opinion - that is your right. You could ask at your practice whether they have a GP with a special interest in copd - there often is one. It sounds like your GP is not well educated about lung disease - Bev's point about a CT scan being able to show exactly what damage you have is a good one - and one of the things this forum is very good for is teaching us all the need to be proactive and advocate on our own behalf. You'll always find support here.

    You might also find it useful to run all this by the BLF helpline - 03000 030 555, office hours - their nurses are friendly and very well informed.

    Please don't assume that as you are grieving for how you used to be - and you will be, that's natural - that you have to settle for how you are now. Life may be a bit slower and you will probably need to pace yourself but you shouldn't have to give everything up. I am at the severe stage and an intermittent user of ambulatory oxygen, and when Im on it I still cycle and dance - I mention the latter as you did above. DON'T settle for no more dancing. Take care :)

  • Thanks O2trees, you have given me such a lot of information and advice I really appreciate it. The Anibiotics was Amoxicillin and then Etheromicine. My cough is non productive so I can't do the sputum test. I have to say I am amazed at how much information is available on the forum you are all very knowledgeable and supportive people everyones wise words are much appreciated. I will press for the referral as I feel I need to be more confident about the condition that I now have to cope with what every it may eventually be confirmed as. A particularly thank you for letting me know that all the things I miss are still out their to be enjoyed x

  • Hello and welcome rosalada

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