feeling lost asthma/copd

Help as feeling lost

Hi. I am a 51 year old lady and have smoked about 11 cigarettes for almost 40 years. 2 years ago I become quite ill out of the blue. Every day and night since then is almost the same. Being breathless, not breathing well and coughing so much mucus up all the time with a cough that has been with me every day and night a cough that people tell me they have never heard anything like it with someone coughing all the time so bad. Doctors not been too good. Was put on a blue inhaler and serevent and clenil modulite 200. Had a chest xray last year all clear. As time has gone on I have struggled more and the last few months has been dreadful for me calling a ambulance out 3 times, twice I was put on a nebuliser and once on oxygen. The last couple of months become very breathless hardly able to get up my stairs anymore. A average day is wake about 3.30am have to cough up mucus for about a hour and struggling to breath. Oxygen levels for that hour between 90 to 92. Wake again about 6.30am with another hour coughing to get mucus up with oxygen levels again between 90 to 92. Peck flow if I can blow into it at this time of morning is usually 150. Throughout the day I am always having to cough mucus up with peck flow 300 after ventolin but after about a hour dropping down to 250 again. The last 4 months have been taking between 24 to 26 puffs of ventolin a day. A new gp has joined the surgery and he at least has took me seriously. 2 months ago went for a chest xray all clear again.

Last years spirometry June 2013 was as follows fev 1.7l-1.70 normal fvc 2.35l-2.35 normal. fev1/fvcpercent 72.3%-72.30 normal I was told by the asthma nurse that done this test there was nothing wrong with me and sent home to get on with it although I knew there was something wrong with me. 4 weeks ago had reverse spirometry and told they where very low results. Doctor then put me on symbicort 200/6 and took me off the serevent and clenil modulite. Went back last week for a spirometry and results as follows best spirometry result fev1 base 1.16 %54 min 1.49 pred 2.11 max 2.73 fvc base 1.96 % 78 min 1.78 pred 2.49 max 3.24 pef base 203 %59 min 252 pred 340 max 429 fev1/fvc base 59.2 %73 min 69.5 pred 80.2 max 90.9 Interpretations ats moderate obstruction lung age 85. I have asked is this copd been told I have a bit of asthma and a bit of copd. To me I have more then a bit of copd but I am not a doctor. The last 2 weeks doctor has given me saline 6% to use through nebuliser to help me with the none stop coughing up of mucus. It seems to me at least every 2 hours have to take a puff on a inhaler or really really struggle. I am so lost and have no idea what is happening to me but I do know my life is not the same any more. I am so tired so lost and struggle to do even simple things around the house now. Could some one please help me with what is going on with me Thank you

3 Replies

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  • Hi Gloria,

    I have COPD and asthma, although unusually I have never been a smoker and am only 40. Unfortunately both my grandads were heavy smokers from a young age, and had COPD for years, which rapidly increased in severity as they refused to give up smoking. One grandad eventually gave up in his late 60's but the damage was done. Its not clear whether you are still smoking, but the best and most important thing you can do for your lungs if you are, is to stop. If you don't, the COPD will simply progress over time. My granddads ended up immobile and on oxygen 24/7 - which isn't unusual in the later stages of COPD if the individual continues to smoke.

    Nebulised Saline is very helpful at mobilising secretions, it is best to have it after your bronchodilator (usually salbutamol), as the salbutamol opens the airways and makes it easier to shift the mucous when you have the saline. Saline can also be irritant when you have asthma, so having the salbutamol first, reduces the chance of the lungs being irritated by the saline. The other thing which is really helpful, and less tiring than the coughing (and more effective) is the active cycle of breathing technique. This was taught to me by the specialist respiratory physiotherapists at Papworth Hospital (heart and lung hospital). I have attached the leaflet about it for you to look at.

    What colour is the mucous you are coughing up? If it is very discoloured (green, rusty brown, dark yellow - anything but clear) then you very likely have an infection. If that is the case, I would suggest taking a sputum sample in to your GP, so they can send it off for culture, and to find out which bugs are growing and what antibiotic it is sensitive to. Put it in a sterile container (wash something out with boiling water if you don't have a specimen pot).

    Are you using your inhalers with a spacer? Like an aerochamber? Thats also really important, and delivers more drug into the lungs, rather than it sticking in your mouth and throat. It means your salbutamol will be more effective, as will your steroid inhalers.

    If you are unhappy with your treatment, you can ask to be referred to see a respiratory consultant - its common for people with COPD and asthma to be managed by a hospital consultant, and they will also do more tests than a GP.

    Here is the leaflet about the active cycle of breathing technique:

    papworthhospital.nhs.uk/doc...

    The other thing which is helpful in mobilising secretions is something called an acapella device, which I was given by the physio's at Papworth, and might be worth asking about:

    papworthhospital.nhs.uk/doc...

    Hope that helps a bit...

    Lynda :)

  • Thank you Nursefurby for getting back to me.

    Yes I am giving up smoking with the system 4 stop smoking and am down to 2.4 cigarettes for the next 14 days and then will go down to 1.6 a day so getting there.

    Yes I always have a couple of puffs on my ventolin before taking the saline.

    Have had the mucus for 2 years and it has always been white never changing at all.

    I have had it sent away to be looked at and all is clear.

    Yes have always used a aerochamber.

    Only other inhealer apart from ventolin now is Symbicort Turbuhaler so no spacer for that.

    I only live up the road from Papworth hospital but no doctor has ever mentioned me going there.

  • Great news about the reduction in your smoking, good for you :)

    Papworth tend to see patients who can't be managed by local hospital respiratory specialists (tertiary referral). But your GP should be able to refer you to a local respiratory consultant in secondary care if you ask. I ended up at Papworth because the local respiratory consultants couldn't manage my care.

    I know it probably doesn't feel like it, but it's good news that your sputum is clear. :) it is important to keep clearing it off your chest though, as the more it sits around, the greater the chance of infection. That's where both the salbutamol, nebulised saline, and active cycle of breathing technique can help. Steroid inhalers are an important part of management too, as they reduce inflammation and mucous production.

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