Hey morning all. I am new on here. I was diagnosed with emphysema on tuesday. I'm not sure how I'm feeling at the moment but definitely anxious. I wasn't given any real information by the consultant apart from a normal person has 75+ and mine is 40. However she didn't explain properly what this actually meant. Any ideas?? I was too stressed to ask many questions at the time lol. I have made a gp appt for more info. Anyway i just wanted to introduce myself and i hope you all have a nice day xx

18 Replies

  • Welcome Sue and hope you enjoy this great site. I am sure someone will be able to help with the numbers you have mentioned.

    Wishing you well. Xxxx

  • Thank you for replying :)

  • Sue, If the dr was referring to FEV% 75% is not normal. Did you do a spirometry test?

  • I did yes

  • This may help you.

    What most people will tell you is that you should not get too anxious about this disease. You probably need to make some changes in your lifestyle which will slow down the progression, most important is diet and exercise. I have gone from stage 2 with 69% FEV to borderline stage 1-2 with 78%FEV. I now regularly cycle 7-10kms, walk the beach for 30-45 minutes and have just started yoga. My diet was always quite good but i now eat a lot more veg...daily, plus mountains of fruit plus multivitamins. I also take cannabis oil, but that is another story. Search my previous posts for more info.


  • Thank you. I will do that

  • Welcome Sue. I am not sure what your consultant meant. Good idea to make an appointment with your GP. Next time you see your consultant/GP take a note pad with you so that you can jot down things he has said. Or take a list of questions which you can give to him and have one yourselfwith spaces between the questions so that you can write the answers down on. You could also ask if you could "tape" the consultation on your mobile phone so that can help you remember what was said. Might also be helpful to take someone with you. I now get my consultants to send me copies of all letters after I found out last year that one of the letters he had sent to my GP did not reflect the consultation we had had and one letter had been filed and not acted upon and it asked for a change of medication! In fact this letter had not even been read for some reason the admin had just filed it. Another letter got returned to the sender saying I was not their patient - even though th address was correct. I can't tell you the number of times they have told me that faxed letters had not got there and then the next time I was there I asked the GP and there they were. I know I was having an exciting time last year going to various consultants but that is really no excuse for all that happened with the letters. Once you have the letters make an appointment to talk them over with your GP. Try not to look things up on the internet because although there is a lot of information out there it may not actually be pertinent. The best place to ask questions is somewhere like here or at your GP surgery. We can generally find someone who can work out what it is.

  • Some very good points there thank you. Pen and paper next time definitely :)

  • Hi and welcome to the site. It's all fairly new to me too (found out I have copd in February) and I remember feeling very overwhelmed by it all. I suppose we all fear the worst but then realise it's not the end of the world but it's a tough time to get through. Guys folks on here helped me enormously and put things into perspective. I have an FEV1 of 52 but still work and go out and stuff, I just pace myself a little more.

    You've found a good place to be for information and support not to mention some laughs along the way.

    Make yourself at home xx


  • Welcome Sue1919, can't help with the numbers but I'm sure somebody else will know :)

  • Welcome to this brilliant forum. I don't have your condition but very many here do. So I can't help much. But lots of others will.

    All the best

    K xxxx

  • Hi Sue1919 just like to welcome you to our great community. There is a great bunch of people on here that will help in any way they can.

    You are bound to be anxious when you have just been diagnosed with Emphysema but your condition although progressive can be slowed down considerably with the right treatment and by taking care of yourself.

    Don't know what the figures mean as there isn't enough information about them. When I go to see my Consultant I always ask for a copy of the letter that is sent to my GP about the consultation. If you have done any Lung Function Tests while you were there the results will be included in the letter as well. That way you will have the same information about your condition as your GP.

    Always take a list of questions you want to ask your Consultant. That way you won't forget anything.

    You are also on the right forum for asking anything about Emphysema. There are plenty of people on here that have the same condition as yourself with a wealth of knowledge. Unlike Googling things you will get honest answers to your questions.

    I wish you all the best and am sure you will make many new friend here.

    Regards. John

  • Hi Sue1919and welcome to the forum.

    It's natural to feel shell shocked after diagnosis. I was terrified for months, (Thanks to scaremongering Google.) until I found this site and learned it's not a death sentence.

    To try and put it in prospective, your diagnosis hasn't suddenly changed your health overnight, you are no different today than you were before diagnosis, when you were busy getting on with your life, oblivious to your copd. Nothing has changed there.

    The only difference is you now have an explanation for the days you felt unwell or breathless.

    The good thing about diagnosis is you now have the opportunity to possibly improve those figures, (We de-condition through adapting to our breathlessness) and through exercise and looking after yourself, rein in, the progression of your COPD.

    I was diagnosed Jan 2012 and I'm no worse now than I was then.

    I can't exercise very much due to other conditions, if I could, I know I could improve my breathlessness considerably.

    I thankfully, eventually managed to quit smoking and walk my dog a couple of times, everyday.

    You'll get all the support you need on here, it's a very caring forum xx

  • Hiya . I am new too and in very much the same position as you are having just been diagnosed in the last couple of weeks. Welcome

  • Welcome, it is all very scary when first diagnosed., and it is difficult to eat correct diet & exercise if you are SOB. I am assured that it will all eventually calm down once you can get your anxiety under control. Don't do Dr.Google, it will frighten you more. This is the best forum to get answers and of course your GP. Notes are essential. Jean x

  • Sue1919 welcome to this fantastic site your very lucky because so many on this forum know any question you can ask them take care Kathy x

  • Welcome Sue x

  • Thank you for all your messages. I do feel a little less anxious after reading them. I'm off to the GPs in the morning (with pen and paper lol) hopefully I'll get a few more answers :) xx

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