scared and confused

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hi i would like some advice, i am a 43 yr old mother of 7 i have had asthma since i was 21 and although it was very bad at first i managed to keep it well controlled for many years, i was a 20 aday smoker, but gave up in january 2009, this january i was diagnosed with copd, given new inhalers and no advice and left to it, things seemed a bit better but in july i was taken to hospital with severe breathlessness, had an x-ray and told i had pulminary fibrosis, and sent home i eas in a state and thought i was dying,went doctors who referred me to hospital had loads of test told i did not have fibrosis but did have asthma with acomponent of copd had my medication changed again, went back to see doctor medication changed again, have now had my medication changed 6 times and each doctor not sure if i should be treated for asthma or copd let alone the asthma nurse saying you can not have asthma and copd together, i am now on seretide 500 2 times daily carbocistine 5mg 3 times daily and tritopium 18mg at night and salbutomol as needed but still no help or advice i am scared and confused about copd, i will give you the readings from my tests at the hospital and hope that someone could please try and explain them to me cause i do not know if they are bad or good and i am so scared i am having panic attacks and scared i am going to die soon and leave my children my readings are (fev1/fvc 1.73/2.79) ratio of 62% and after bronchodilators (fev1/fvc 1.92/2.92).

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5 Replies

  • Posted

    Hi there 'gameshow67',

    So sorry to hear about the awful experiences you have had this year, I can understand how confusing and frightening you must have found it. First may I assure you that with your FEV1 of 62%, you will be around for a long time, so please try not to get too upset. While Asthma and COPD are two different conditions, they do often co exist together, or someone with COPD may be said to have 'an asthma component' to their disease. The bottom line is that whatever 'components' or variations we may have, the end result is breathing problems, shortness of breath and a tendency for colds / infections to go straight to our chests.

    It is good that you have already stopped smoking as you have caught it while it is still in the 'moderate' stage, and as long as you stay off the cigs, take your meds and generally look after yourself, it should, by and large, stay in the moderate stage. Of course, it is still a good idea to learn as much as you can about coping with all this, especially as you must really have your hands full with the children.

    I will have to leave it at that for now, as I was just 'checking in ' before bed, and am so tired I can barely think straight - but mostly when I saw your post I didn't want to go before reassuring you that you will be OK. I am sure that Jacee , Ann , Rita and others will all be along to help and reassure you too - I do hope you have 'Bookmarked' us as it can be difficult to find this site sometimes!

    Please try and stay positive, and know that we will all be here for you if and when you need us. I will be checking in over the next few days to see if we hear back from you - I hope we do

    'Nighty Night, best wishes, Vanessa X smile

  • Posted

    Dear gameshow67

    Please try not to stress so much it is not going to help you at all. Your fev% would be considered great by those who are less than and not so good by those who are more than. To give you a comparison I know people with 22 and 36% fev who are still able to be active.

    Many people live with COPD successfully, following all the guidance and advice on offer. Such things like, not passive smoking, eating well, regular exercise, avoiding contact with those who have colds and flu symptoms.

    Do ask your doc about accessing a pulmonary rehabilitation programme, where you will learn many self help techniques, that will enable you to cope and live successfully with copd.

    I'm not sure why you were told that your can't have asthma and copd together as I know several people with both. Seretide is the combination inhaler for people with asthma and copd. Carbocisteine is a mucolytic.

    If you are not already under a respiratory specialist do ask your doctor to refer you, having the tests requested by the consultant, the results should then indicate your specific diagnosis.

    Hope some of this information has been helpful to you. The important thing to know is that there is still a lot of living we can do even with COPD. Even when FEV is below 65%.

    Look to the future, ask your doc about pulmonary rehabilitation and ask to be referred to the respiratory consultant.

    copy paste this address into you browser:

    lots of information to help you understand.

    Good Wishes V

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  • Posted

    Dear Gameshow - I can add nothing to the posts of our friends above. I too am newly diagnosed with COPD and as is my usual way, am blocking out any offers of help. It's a bit like the child covering up his eyes and then assuming that because he can't see others, then they can't see him. Be guided by our more experienced friends here.

    I have now made contact with a local Breathe Easy group, which is a major step forward for me, although I still haven't told any family members.

    I hope that we see a lot more of you


  • Posted

    Hi gameshow67,

    It sounds like you've been really put through it these past months. I think it's one thing being poorly and wondering what's wrong and another when you've been given a proper diagnosis and can then get on with dealing with it. In your case you have not been given the chance to come to terms and get on with it because your diagnosis keeps changing.

    I agree with the others who recommend that you ask your GP to refer you to a respiratory consultant - I also think your GP needs to know how worried you are because of all the mixed messages. Is there someone who could go to the surgery with you to help you talk to your GP?

    As for your FEV1 - well mine is 34% and I only stopped smoking in August so don't suppose it's changed much but I am trying to do all the things I should - healthy eating ( well most of the time!), exercise (lots of housework as well as walking) thinking positively that I have stopped smoking and after 43 years of puffing away (I'm 59) that's something to be proud of (giving up I mean - not the number of years I smoked!!!)

    Anyway I do hope that you manage to get this resolved and find some clear answers. Hope you post again soon,


  • Posted

    Hi gameshow67,

    I just saw your post and wanted to say I can empathise fully. I too was scared and confused but I took a deep breath (well, as deep as I could!) and did 3 things; 1. stopped smoking, 2. came on this site and got as much info and support as I could and 3. looked for more info. I was diagnosed at FEV1 22% but it has now improved slightly and I am still working full time.

    I can only agree with the advice already offered, to take someone with you to see the GP is a good idea. You can ask for a referral to your local hospital and see a consultant who specialises in respiratory diseases and for one to a pulmonary rehabilitation group, if they have one in your area. If you also eat sensibly and take a regular amount of exercise you will be helping yourself, as you will if you stay away from secondary smoking.

    You will also find help and advice through the British Lung Foundation who have a helpline to offer confidential advice, support, etc. You can contact them on ******** or on their website. Please try to stay calm. But don't be too passive. GPs are not experts in COPD and so you need to push to see someone who is. Let us know how you get on, and pop in for a chat and a cuppa :coffee: at any time. :wink:

    Good luck




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