Well Hello everyone

I ve been looking a this site and many more since I had a Ct scan in May that showed severe emphysema. As i m fairly asymptomatic it was a hard pill to swallow and probably like most I turned to google to get some answers and after feeling like I only had between 6 months to two years left I found you guys!! I would like to thank you all for your input here and the wealth of information I have learnt from you all...you are all a mine of information and inspiration to someone new to the club xxxx

16 Replies

  • Afternoon therese. So glad u joined us, u will find we are one great big support family, and because we all have different problems, same problems , different stages, newbies and old hands, there is always some one available for advice , a shoulder to cry on, and even humour. Oh and u will be around for a lot longer than that if u take care if urself, don't smoke, eat healthily, exercise as much as u can and take ur meds as prescribed. X Sonia x

  • thank you sonia, yes you are all a great big support family and I learn a lot from reading all the posts old and new. I stopped smoking in the day I got the news and changed a few things, I try to eat organically now, take vitamin D and a probiotic daily and try to do more walking than usual but still struggling with the ciggies and have had the odd one here and there. Worst thing is that I know I may as well go to a field and pour petrol ove r myself than smoke...god dammit i is just so hard sometimes

  • I know I packed up the ciggies in November 13 but although I've never touched a fag since I do puff on a tooting pen/ vapour pen which has helped , I don't think I would have been able to do it without it, i enjoyed smoking, this way I get the nicotine kick to the brain but no crap on my lungs, I have it in menthol juice and I can blow out smoke like I'm chuffing on a fag, keep trying it will benefit u. Good luck X Sonia xx

  • Sonia has given sound advice there therese and it will be nice hearing from you whenever you feel like posting or chatting in any way. I am carer for my hubby and he has sarcoidosis, copd, heart problems and prolapsed disc but is still here and smiling! Take good care of yourself and good to welcome you to this great site. xxxx

  • Hi sassy, thanks for the reply...yes it is a great site and well done to you for taking care of what must be a lovely man....wishing you wellxxx

  • A warm welcome Therese. I would say keep off those google sites as from what others say they don't give a very accurate prognosis.

    I too have been diagnosed with severe emphysema and severe asthma also. My Fev1 (at the last spiro) is a little under 37??? Don't really see much point in having any more tests unless they come up with some kind of treatment.

    I'm sure you 'll learn a lot from everyone here and make new friends too. Warmest regards ~ Lovelight xx

  • Hi lovelight, yes at first look google was very frightening with its outlook, but it also lead me to a good few sites...this one and one in canada and a few more... I m based in australia and I think this site out of all is the best.... for me anyway, its the only one i became a member of. Compared to a lot of you on here I am extremely lucky so far...although I am sure I will have to endure what a lot of you are going through now at some point and I am so grateful that you are all on here sharing your ups and downs and in general your experience on how to cope with this disease. Although a Ct scan radiologist classified me as severe my FEV1/FVC was 65% so the specialist I saw said I was moderate. At this stage I take no medication and the specialist said he didnt need to see me any time soon, so i guess at this stage I m quite lucky! i dont see the point either in getting test after test to be told what you probably already know. Thanks for the warm welcome lovelight and heres to a good day tomorrow xxx

  • Hi Therese - welcome!

    Im a bit puzzled. You say you've been told you have severe emphysema but only mention having had a CT scan in your post. In your profile you say you were told in May that you have an FEV1 of 66%.

    As far as i know a CT scan can't determine what stage you are at.

    An FEV1 of 30%-50% is severe - stage 3. (This is the stage Im at.) So if your FEV1 is 66%, then your emphysema is classed moderate, not severe, and the upper end of moderate. (From my own experience and observation, you would be unlikely to be asymptomatic if you were severe.)

    I was diagnosed when i was 54, much like yourself and my FEV1 then was 59%. I was told then that I would probably live another 20 years by my then GP, who happened to be a professor of general practice, so should know what's what. I'm not prepared to be limited by that though, still going strong 14 years later as are many here. Hope this helps.

    PLEASE TOTALLY STOP SMOKING!!! This is the biggest thing you can do for yourself to stop progression of the disease. Big congrats on quitting but there should be no sneaky ones ;) If you feel the urge to have one, divert yourself by coming on the forum instead. There will always be someone here to encourage you. :)

    Next best thing is get yourself referred to a pulmonary rehabilitation course by your GP. Exercise keeps you fit, and fit muscles use oxygen more efficiently and its becomes easier to get about. Best thing to delay progression and keep yourself asymptomatic as long as possible.

    All best :)

  • Thanks O2. I too, am confused. I had a chest xray originally after a chest infection, which by the way I had to ask for, as i could feel fluid on the lungs, this came back mentioning emphysema and no fluid on the lungs at this stage, as I was already going through a course of champix to stop smoking I asked for a ct scan to get the full extent of damage and was informed in the report that I was severe emphysema which didnt make sense to me either as I have a close relative whose moderate with asthama too who struggles to breathe. I asked then to be referred to a specialist who did the tests clinically, and then ordered after series of antibiotics another ct scan which showed an improvement on where the infection on the lung was... and I was told I d had an acute exacabation and that I was more moderate in his opinion than severe. The Gp I saw just gave me spirava and told me i needed to take that and i said why and he said because thats what people with emphysema take and I said I dont even take ventolin and he said well you need to take that. Anyways, needless to say I checked with the specialist that I asked to get referred to and he said, what I thought ....I didnt need it and if i felt breathless to take ventolin. So not much help there from the local GP. The smoking is really rather silly and I know it, ive just closed a business and could give a whole heap of other excuses too, its a weekend thing...just this weekend, tomorrow I will again be a non smoker as for tonight ,well i m a smoker. Thanks for responding O2, whilst I ve been looking at this site, your comments are always extremely sound and your knowledge appreciated.

  • I have just given up smoking about 5 weeks ago - my partner asked ' do you want to live longer or do you want to smoke'

    If you need a cig think about your lungs and come on here :)

    Big well done so far for giving up.

    Oh and welcome to a great forum :) :) :)

  • Welcome lovely xx

  • Glad you found the site! ....I have emphysema and was diagnosed 10 years ago and I am still here and I am going to be 77 in January so l had automatically assumed I wouldn't last long at my age....you will learn lots and lots from this group and personally I find it wonderful that everyone listens and are sympathetic as we all have similar problems at times and hearing how others handle the problems, etc., is a wonderful boost. Take care and try not to stress :) :)

  • Hi terese I am glad we helped. I can't add anything to the excellent advice you have been given except to say no more indiscriminate googling and stay with us here. x

  • Can't add much to what others have said but want to welcome you here.

  • Welcome

  • Hi therese and welcome,its almost criminal some of the things you can read on google about our condition its enough to send you screaming to the hills lol. Im so glad you found this site there are lots of people on here with good advice and lots of reassurrence.Look after yourself with diet and exercise,take your meds and there isnt any reason why you shouldnt live a long and happy life.

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