I have COPD, no other info. Is this normal?

3 weeks ago I had my diagnosis of COPD from the nurse who runs the COPD clinic at our GP surgery. I was prescribed a Ventolin inhaler (Sambutamol) and today's appointment was a follow up to see how I've got on. All my original discussions with nurse, GP and consultant said my breathlessness was probably not due to smoking as I gave up over 30 years ago (was smoking 20 a day at the end, smoking in total for getting on for 15 years and gave up at the second attempt). I was shocked to be told that my COPD was due to the smoking and couldn't think of any questions to ask the nurse at the time.

Today I went with a list of questions now I've had time for the diagnosis to sink in, found this site and learned more about COPD.

My first question to the nurse was "What do I actually have as I understand COPD is an umbrella term, is it chronic bronchitis, emphysema, or what?".

The nurse showed me the consultant's letter. He just says COPD probably due to smoking. She explained how with asthma the airways are flexible but with COPD are more fixed and don't have the elasticity that you'd still have if you have asthma. Is it normal to just be told you have COPD and no more detail of an exact disease?

I also asked what stage and was told moderate with FEV1 = 1.3 - 62% and FVC = 2.1 - 63%. I'm not sure what these mean, not quite got my head around everything yet. Can someone explain these figures please?

Discussing how I've got on with the Ventolin inhaler the nurse thinks I may be better with Spiriva as I've told her I'm getting soreness and a raw feeling in my throat and chest, plus an occasional heavy feeling like a weight on my chest mainly in the evening, and I now have to see one of the GPs to discuss possibly changing to this, but I couldn't get an appointment earlier than 8th April Following that I then have to wait a further 3 weeks to go back to the nurse who runs the clinic to discuss how I'm getting on and I will also get a pneumonia jab at that time. So by the end of April I may be on Spiriva which may be more suitable for me and it will only have taken 9 months to get this far!

18 Replies

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  • I would strongly suggest you phone the BLF helpline to discuss your results with them.

    All I can add is my GP told me I had emphysema, my FEV1 is 55% (moderate) and that I will ave an annual check up.

    I find salbutamol does nothing for me, but Spiriva really helps me.

    Lynne xx

  • YUP HELPLINE VERY GOOD ADVICE....Copd can be caused by a variety of things chemicals fumes ect ect,,smoking is the stock answer,,,, dont be afraid to question your gp

  • Hello SeasideSusie :) and welcome to the BLF web community. You're going to like it here as there are so many friendly people (either already living with COPD or caring for someone who lives with COPD). We try to help each other, both with emotional issues and practical advice as much as we can.

    I'm disappointed yet again to hear of a GP/nurse who thinks it's sufficient to tell a patient that they 'have COPD' then leave them to just get on with it. Thank goodness you found us ! :)

    Please do as one or two of the others have suggested and ring the BLF Helpline. Their number is 03000 030 555 and they are open Monday to Friday 10am to 6pm. There are some lovely nurses there who will offer you help and advice on this condition.

    The most important thing of all is not to panic now you've got the diagnosis. Providing you keep up with your medications, eat healthily, and have a sensible exercise programme then you will have many, many years ahead of you yet (albeit they'll be taken at a slower pace) :)

    My diagnosis was 13 years ago and I still feel I lead a productive life.

    Please keep us up to date with how you are progressing and don't forget ................

    keep on keeping on :)

    very best wishes

  • Thanks Elian. I actually found you a couple of weeks ago and have done some reading of questions and blogs and am gradually educating myself, plus I've asked a few questions.

    It was actually the consultant's letter that just said that I had COPD with no further information, that's why I asked the nurse if she knew which disease I had but of course she only had the information given by the consultant and the GP will again only have the same information so she wont be able to tell me any more when I see her. In fact I saw the GP first to follow up the consultant visit and she didn't tell me I had COPD, all she said was "You need an inhaler, make an appointment with the nurse to learn how to use it" and I had to wait three weeks for that appointment! The nurse is lovely, she'll answer any questions, she explained the difference between asthma and COPD (although I thought asthma was a form of COPD) but it seems as though the patient has to be pro-active rather than any advice offered as a matter of course.

    I asked the nurse today about exercise. Pulmonary rehab is 60 miles away. One of the other nurses has just started a class at the local council gym but it is for people who have reached a much more advanced stage than I have. It appears that walking my dog, albeit strolling as my dog is a plodder and a sniffer, for a couple of walks each day of around 45 mins to an hour each depending on the weather, is enough exercise. I was quite surprised!

    The surgery on the whole is a joke, none of the doctors are particularly good and there's a fair bit of fobbing off in general so I count myself lucky that I was referred for the cardiac and respiratory investigations. Unfortunately there is no choice where I live as it's fairly rural and the surgery covers a big area including surrounding villages. The GP I am seeing at the moment is not my own doctor who appears to be having a fair bit of time off at the moment which is a shame as she seems to be the best of the bunch.

    P.S. How do you add the emoticons? With a couple of forums I visit they're there with the message box but I can't see anything on here.

  • To get a smiley just type a colon then, without leaving a space type a close bracket . I've added a space just for illustration ; ) without the space inbetween it becomes :)

    To frown do the same again, but an open bracket : ( becomes :(

    There is a blog on here somewhere by Gordon57 which explains how to do some more. I think if you search for 'emoticons' or 'smileys' you will find it :)

  • My FEV1 is .73 26%. Very severe, I get short of breath if I over exert myself but apart from that I live near enough a normal life. I just have to stop and rest a lot. Numbers don't mean a lot. It's how you feel in yourself that counts.

    The nurse said that the airways in COPD don't have the elasticity. In fact it's some of the alveoli that have lost their elasticity. This is emphysema.

    I found this video on Youtube one of the best that explains COPD. I hope it helps.

  • Thanks Puff, I don't seem to be able to reply to your individual message. I've listened to the video, I think I'll have to listen a couple more times before it completely sinks in but I'm getting there!

  • CAN SUM ONE HELP ME I NEED A SUPPORT GROUP IN EDINBURGH

  • Hello Seasidesusie,

    As you say about your experience, there are large areas of the UK, where knowledge of certain conditions is poor, even within the medical profession. If we are in those areas, then unfortunately it is up to ourselves to find out about what is wrong with us.

    The best general source of knowledge that I have been able to find so far is the GOLD Report. It is a little bit out of date where it comes to intervention treatments like valves, steam treatment or chemical foam, but as to how COPD affects us, and how the drugs work, it does have really good descriptions. It is written in a technical manner, so can be hard going for the layperson, but I think is worth the effort. The link for this piece is :

    goldcopd.org/uploads/users/...

    Also I have written a couple of articles about my experiences as a patient who has had Endobronchial Valves fitted, the links to those are:

    blf.healthunlocked.com/blog...

    blf.healthunlocked.com/blog...

    I also wrote an article about breathing techniques to help people through panic attacks etc, and to generally improve breathing efficiency. The link for that is:

    blf.healthunlocked.com/blog...

    There is a lot of reading there. Don't try and do it all in one go. You have many years to go before you get as bad as the more serious cases on here. But now is the time for you to start fighting it. We fight it with knowledge. You can do your own research as many have, or follow the pointers we give. Most important is your own fitness, and keeping clear of infections. Ifyou have questions, ask. There is no such thing as a stupid or trivial question. If you don't know or are unsure, no one on this site will think anything of it, except to find you the best answer possible.

    For now, be assured that while you have had a shock diagnosis and maybe poor support from your own medics, here some of us will give technical explanations, and others will give a virtual 'tea, biscuits and a hug' response. All support is important, get it here and use it.

    So breathe easy,

    johnwr

  • Can I ask what cardiac investigations you had done susie, and how the diagnosis of copd was reached?

    ff x

  • Hi Fairyfootsteps. I went to my GP following an episode of severe breathlessness while out walking my dog. So she would have a full picture I mentioned family heart history which isn't good. She arranged for an ECG and Spirometry to be done at the surgery. I was told ECG showed nothing to worry about and Spirometry showed slight narrowing of the airway. She told me she would refer me to Cardio-Respiratory dept of hospital for a stress test. I assumed (wrongly) this was going to be the treadmill test for lung function.

    3 months later I had first hospital appointment where an ECG was done plus heart scans. Discussed heart history and breathlessness problems with the doctor. The breathlessness was a bit more noticeable now. He told me I would have to go back for full lung function tests and a stress echocardiogram.

    Another 3 months later and I had the lung function tests (the big spirometry machine and the cabinet) and a supine bike stress echocardiogram where they take heart scans before and after pedalling. This stress echo apparently showed one lazy heart valve or valve becoming blocked and was put at low risk with no further action. The lung function tests showed FEV1 - 62% and FVC - 63% so I was diagnosed with moderate COPD - I was given these details today when I asked. There will be no follow up at the hospital as consultant requested GP to commence inhaler therapy and I will now be under just their care.

  • Hi seasidesusie I am not long diagnosed with copd I had an X-ray in December that showed I had a problem so gp gave me salbutamol inhaler and referred me to practice nurse for tests after which she told me I had copd and gave me spiritual to use once a day and to use the other inhaler as required so like you I am an ex smoker so that was the likely reason for me having this .so I joined this site and have learnt more about this than was explained to me I find the people on here very nolagable so they shoed keep you right x

  • Hi Bacardi. I also had an x-ray but I don't remember what the consultant's letter said about it (I read it on the screen in the nurse's office today) but it wasn't anything too bad. I told nurse about some possible effects I may be getting from the Salbutamol and she thinks I might be better on Spiriva so that's why I have to go back and see the GP to see if she will change me on to it. She said a lot of her patients have gone onto Spiriva and are doing much better on it. I also mentioned that although I got on fine taking the Salbutamol through the spacer, I was not doing well with it directly in the mouth as it was going on my tongue rather than getting down into my lungs and that if I needed to take it when I was out I'd probably not find it effective. She said it could possibly be changed from the normal blue inhaler to a smaller handihaler type thing like the Spiriva comes in.

    I was very surprised at my diagnosis because all along everyone had said the breathlessness probably wasn't due to smoking as I'd given up over 30 years ago.

  • Hi I was the same I had been really breathless for about 2years even on holiday last year I was struggling + tiredness and it taken till mid December before dr sent me for an X-ray and a week later told my lungs weren't right an given an inhaler an sent to the nurse for test who ruled out asthma and said I had moderate copd and put me on spiriva .i am also using easy haler as required up to 8puffs a day . I am still getting over a viral infection which went into my sinuses and I am left with post nasal drip I am due at the dr today for my blood pressure so I have a lot of questions for her that I wouldn't have thought of without some of the things that's been discussed on this site which has been a godsent as I was feeling so alone and down since being told they bring a smile to my face with some of the blogs will keep you posted how I get on . X

  • :) sorry it is spiriva inhaler x

  • :) sorry it is spiriva inhaler x

  • It's OK Bacardi, I knew what you meant :)

  • Hi, I can only reiterate what others have said on here about using the BLF helpline. They are no end of help and will guide you to more information and will support you along the way.

    Self education and good self care is vital, and we are all here to help as well.

    Here is a govt doc. About how the NHS hope to help us. Perhaps you will find it helpful?

    nice.org.uk/CG101

    See you hear again:-)) have a lovely day ....

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