New emphysema diagnosis 😫

Hi I thought I would join this site because after having a chest X-ray three weeks ago, my Doctor very casually phoned me yesterday afternoon and said I have emphysema!!!! He is referring me to the hospital to have further tests but didn't give an indication of stages etc...just said don't worry about it!!! I am 39 and have smoked less than 10 a day for over 20yrs (I shall never smoke again) but apart from a nasty cough each year I'm very fit...I go to the gym and eat well and take yoga classes...in fact I don't really get breathless very much so I'm shocked by the diagnosis and am very much hoping it's mild 🤞

I have two children with severe autism who really need me to be around for many years to come...they struggle to be with anyone else and have no contact with their father at all (disappeared 3 years ago to Spain) so I guess I'm asking how many people have gone on to live a long time after diagnosis because googling it has lead me to believe I will be lucky to make it to 50 😢😢😢

Xxx

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20 Replies

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  • Welcome LisaB23

    Emphysema is a type of COPD which I've had for many many years. I'll be 86 this year and my life-style has never been as healthy as yours. Google is not a reliable source of information.

  • Thanks so much...being here a few hours has stopped the worry and the tears! I'm glad to see you are going strong at 86 that's very encouraging to hear xxx

  • The problem with Google is that anybody can write anything and Google will find it for you indiscriminately. Anyone diagnosed with an early stage of emphysema can take great heart in the fact that now you know you can do something about it and, while it cannot be cured, you can slow progress down almost to a stop. Getting rid of the cigarettes is a very important step. Keep up the exercise levels and listen to your docs and you will probably die of something else entirely. :) Welcome to the forum. x

  • They found it by accident and it really has given me the kick up the bum I needed to put the cigs down once and for all. I quit both times I fell pregnant...and have actually never been a very heavy smoker only really enjoy occasional cigs, which is why I end up starting again!!...I worked in smokey nightclubs for 15 years so I think that has been a major factor. Reading these replies has made me think perhaps I'm lucky, it's been noticed early enough for me to do something about it and may have given me more years. Xx

  • Welcome to you and great replies so far. Take care and well done for not smoking again. Xxxxx

  • I really NEVER will again, I can't leave my two boys alone in this world, knowing I did it to myself 😪Xx

  • Hi Lisa - you could ask your doctor for an Alpha-1-Antitrypsin blood test (A1A). This is an enzyme which is compromised or missing from some people and causes a type of copd. It's quite rare and often explains why younger people get a copd diagnosis which is normally an older person's condition. There are people here with A1A so hopefully one or more will be along.

    Well done for quitting the cigs - now exercise every day and eat well with as little as possible junk food. Take care.

  • I'm going in for more tests soon so I'm thinking they will check this for me xxx

  • Hi Lisa and welcome to the forum.

    It's normal to be scared when first diagnosed but, it can be managed. I was officially diagnosed in 2012 but, I was given a spirometry a few years before, when I was about 2002 and advised to stop smoking. I stopped for a couple of years and then started again in 2006.

    I had a scan in 2012 and was told I had Emphysema and was stage 2 moderate. My fev was in the mid 60's.

    Last week, I had my yearly Spiro review and was shocked to find out I am now 84% mild. I am now 57.

    I can't exercise, apart from a little walk daily, because of other physical conditions, so, the only thing that must have done it was stopping smoking.

    You are already fit so your streets ahead and you've stopped smoking, well done you!!!

    Don't do what most of us has done by trawling the internet, you'll only scare yourself to death. Stay on here for answers and support because the forum is full of very knowledgeable people that have lived with COPD for decades.

    By the sound of it, you are probably mild so,look on the diagnosis as a good thing because, it has given you the chance to keep it that way. xx

  • Wow that is so encouraging that yours has actually not professed but improved a bit!!! Thanks Casper I'm so glad I came to speak to you guys xxx

  • Progressed! Darn auto-correct!!!

  • I improved mine too from 37% to 50% and almost doubled my TLCO (gas exchange of o2 for co2) through breathing exercises and physical exercise, despite some people thinking that you cannot improve lung function.

    But my CT Scan still shows that 2/3 of my lung have been destroyed, the third that I have left works as if it were 50%. Which enables me to live a near normal life including working full time.

    I am 66, my age has not stopped me from improving. I am also a whole lot fitter now and feel 20 years younger.

  • That's amazing and well done you for working hard to improve! No surrender!

    Xx

  • Lisa,Welcome.i think your GP is well out of order.Chest X rays are notoriously inaccurate diagnostic tools to give a definate diagnosis of Emphysema or come to that COPD.You will need far more diagnosis and tests including spirometry to accurately diagnose what is happening in your lungs.From what little i know of Radiology practise if the consultant radiologist had noticed anything really severe on your Xray he would have flagged that to your GP within 48hrs.The fact that your GP has sat on this for 3 weeks suggests that that wasn,t the case and your GP has made a basic assumption.

    No point in telling you to exercise and eat well as with the 2 young boys to look after i imagine all you need at the end of the day is a rest and relax.Good luck to you in the future and try not to worry.Best wishes skischool Mike

  • Thanks Mike...I have to go in for further tests, I'm in a queue (in our overstretched and under funded NHS) so it's bit of a waiting game at the moment...he sounded very certain so I don't wish to get my hopes up too high...but yes, it seems my Doc has been fairly rubbish :(

  • LisaB23Hi Don't believe everything you read on the web, it will frighten you witless. At your age there are treatments out there that can help your lifestyle. Don't fret many people on this forum have had the same news, we are still here, I'm 72. Keep fit, eat well and carry on with life. Retreat into yourself is not the answer. You will get thro' this shock.

    Keith

  • Yes it does make it sound like a death sentence! I won't let it get me down...if anything I will just be even healthier! This is day 3 no cigarettes and I'm very determined! I'm on my way to buy a juicer...no copd will keep me down 😀

  • LisaB23

    Good for you, keep off the weeds and always think positively. Keep up the exercise that is very important do not let your body get lazy, it then becomes a vicious circle. Keep in touch with the forum there are people on here that can give you links and advice and the BLA are always available for info.

    A good chap to contact is stone he has done endless research and gives very helpful advice/links.

    Keith

  • Welcome, LisaB23! I know that getting that diagnosis is a scary experience. Don't go by Google. Everyone is different and if you stop smoking and continue a regimen of daily exercise at your own level of ability, you should live for a long, long time yet.

  • Hi Lisa and welcome to the forum these guys are the best to get advise from I only joined recently having been told in March that I have COPD and I have never smoked or worked with chemicals I am still struggling to understand it. But have been told like you its mild. I could not get Alpha 1 test from doctors but thanks to someone on here I am getting it done from hospital in Birmingham I live in Plymouth. I have been sent the kit to do it myself. Just want to eliminate it a s that only leave passive then good luck with rest of your test.

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