Hi everyone, I have mild COPD with lung function of around 47%. I have just been referred to the Pulmanory rehab course because I've had a few worrying episodes at night where I wake up suddenly gasping for air and feel like I can't breathe, quite scarry. I haven't given the disease much thought up to now or its profression but my mum dies of emphysema ten years ago and the consultant said it can run in families. I swim once a week and do Ceroc dancing, over last year noticed I can't do the fast dances anymore. I think the pulmonary group is a good positive thing although it requires two mornings a week for six weeks. I have seen a gadget a while back in a Chemist which you blow into and it helps excercise lungs...was thinking of getting it, suppose it's a bit like blowing up balloons? Maybe it will help? Anyone have one and does it work for you? I think keeping fit and eating well are important but having hobbies and doing crafts or music really help place your focus on other things that are uplifting. I feel being supported and understanding the disease is important and I'm just starting to learn more, sometimes it's depressing not being able to have the energy to do things but there's so much in life that is beutiful especially in nature. I am not a quitter and very positive most of the time.

19 Replies

  • Hi

    You seem to have good understanding of your I would look at is waking up breathless, one cause could be sleeping position, I can't sleep on my left side, now I find I can't sleep lying flat I use raised pillows which as resolved the issue.

    Good look with your pulmonary rehablitation, ask as many questions you like they know most of the answers from their vast experience working with the different conditions and people they meet through the pulmonary rehablitation courses.

  • Thanks, yes I think the course will be good and help me engage in a more proactive way. I have been prescribed these tablets from the team Mucodyne 375mg Caps Carbocisteine for helping with mucous, but my GP wants to see me first to discuss. Does anyone else take them and are they helpful?

  • Yes, I take these & they are helpful.

  • Yes and they are helpful. I have COPD & Emphysema and I am 69.

  • About the sleeping, it's a big problem cause I can't lay on my back as I also have spinal stenosis and my handS go numb so sleeping on side with low pillow only way, if I put two pillows it hurts my neck (I have prolapsed discs) so not sure what to do, maybe the tablets will help, was also thinking about humidifier?

  • Hi bit confused - 47% isn't mild. 80-90% is mild. Did you mean 87%?

    If you are under around 35, have never smoked much or at all, or have/had close family members with it then you should be tested for a genetic link. It's only a simple blood test. If your doctor hasn't done it yet then ask for it. x

  • Doctor says its mild? Or described as such anyway..haven't smoked for 20 years but was a moderate smoker, I am over 35yrs. Not sure what a blood test would show as COPD is under the wider umbrella of Emphysema so it's a much milder form? My daughters were told to stop smoking because of genetic link later and one has stopped successfuly for nearly a year the other one puffing away she's 24yrs, promises to stop before travelling next year.

  • The blood test is to test for Alpha1-anti-tripsin-deficiency. Which is a rare genetic condition that can cause emphysema. This should be done for anyone developing Emphysema at a young age and without a history of smoking.

    I too was surprised at the dx of 'mild' at 47%.

    Love your positive attitude. Really important to continue to be enthralled by things outside you.

    Enjoy the PH. It is a very well-designed courage.

    K xx

  • Damn predictive text! Should have read 'course' not courage.


  • Ok thanks I will ask on the course tomorrow about the blood test.


  • In that case you must be between 80-90% as under 47% is severe. COPD is the umbrella term for chronic bronchitis and emphysema (sometimes asthma is included too.) You usually primarily have one with a bit of the other. Often doctors won't tell you which you mainly have and just say it's copd. This is because (at least in the earlier stages) the treatment is the same ie inhalers both the preventer symbicort for example though there are others, and a reliver usually salbutomal ventolin inhaler.

    I was told by my nurse that it's better to have chronic bronchitis rather than emphysema. If your daughters were told they have a genetic link then if they are your blood you probably have too hence the blood test.

    Having said that having seen some of the lung diseases on here then copd as long as you aren't severe seems to be the best one to have and at mild as long as you look after yourself you have every chance of living to a ripe old age and something else will get you first. x

  • Unless a person has had a ct scan, Cough, doctors won't necessarily know exactly what you've got. It doesn't always show on a standard xray, and lung function tests don't distinguish. If you're mild then having a ct scan is a lot of radiation just to find out exactly what you've got when the treatment is the same either way :)

  • I didn't know my 'mix' until ct scan done for cancer. I thought I was mainly chronic bronchitis & asthma but it turned out I have emphysema as well, with borderline, clinically insignificant bronchiectasis. The latter could become significant , if I begin recurrent infections again. Hence the Azithromycin. I think you should check out your FEV1 as under 50 is severe. I am severe at present but manage to do most things but slowly. I have a 24 hour anticholergenic, Symbercort, a 12 hour combination preventer, Salbutamol as required, carbocysteine, Singulair, Mometasone & antihystimine steroid. Prednisone & antibiotics when unwell. I know it can't be cured but thank God for medicine. it's great to be able to get out. X

  • Thank God for medicine!! I have the exact same prescription it certainly works for me, my case. Is pretty serious. So take care and medicate. 😉

  • Sounds positive, ok will try the new medication, hate starting yet something else but hey ho must be grateful there are things to take.

  • Thanks for advice, will ask about this. Sorry you are so poorly and hope the medications work for you.

    Jan 👍

  • Ok thanks, I think it's all a it confusing sometimes, I will ask my COPD nurse what my Lung function is again to be sure!

  • Oxygen.

    Out of interest, how many COPD sufferers have home oxygen? I have severe COPD and it has never been suggested. However, an American friends, who is a doctor and chest specialist was aghast that I don't have an oxygen facility at home.

  • Hi Ian, I have been on home oxygen for nearly 4 months after a 13 day stay in hospital due to low oxygen levels. A blood gas sample was taken and a report produced which showed there was insufficient oxygen. I found it useful to buy an oxy meter for less than £20 which I can check on my levels at home. Think you should tell your GP about your concerns. Joyce

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