Just been told i have Emphysema

Hi all I got diagnosed with COPD in August 2012, at the age of 43. Last November 2013 I went for a scan on my lungs had the appointment to go and discuss this in December but due to having exasperation i couldn't make the appointment. so i went to see them last week in March.

So i go and get told that both my lungs show that i have Emphysema she says from top to bottom on both of them. So am not sure what this means and i was too scared to ask her.

So i have an appointment on Thursday to see my GP feeling rather scared now.

I do struggle to walk and have now reduced my hours at work. I do find reading all the posts on here very comforting, so thank you all very much, I might not reply to any, but thank you

take care

J

37 Replies

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  • the scared part is of not knowing how bad it is,but don't dwell on it, we have all been there,wait till Thursday when you've seen the doctor,and ring the blf up, open 10am,there number is at the top balloon,good luck and come back and talk to us,xxx ps if your smoking try and stop,

  • Hi Twiceshy3 thank for your kind words, I gave up smoking in Aug 2012 when i was first diagnosed, but i will come back and talk to you all. perhaps i should call someone, as more often than not i don't have good thoughts

  • good on the fags,go to the balloon, the blf number is there and you can e, mail them, open now 10am,f you ring 10am a nurse will get to you, don't worry, how are you now,in yourself,are the thoughts of omg im going to die, because you ARE NOT going anywere trust me on that 1,members on hear are 80 and more and thay are alive,more members will come on your post so stayed on hear,tad longer, its open 24/7,xxxdont worry

  • Thanks twiceshy3, i will call them tomorrow x

  • are you ok now, hows your breathing,members have herd everything,theres nothing we havnt herd,xxx

  • My breathing is difficult when am walking or doing anything, find it difficult to get dressed in the morning, it is just so soul destroying to go from being very active and fit, to this........cant even walk my dogs far.

    it has been a very rapid decline in the last 18 months, scared for the next 18 months x

  • as any1 shown you breathing exercises, breath in threw your nose, hold it couple seconds, now out threw yer mouth, do it a few times, now,try it,members have videos on breathing exercises ,and blf with go threw all this with you,keep taking yer dogs walkies its good to get out of breath,honest,its good to get out of breath,its not good sitting there,the more you can do its better, even slowly but do it,have you been givin any inhalers at all,to help you,xxx

  • yes i am on 3 inhalers, spivira in the morning, blue inhaler as and when, and symbicort, i have look for videos on breathing thanks xx

  • have you a spacer fir the blue 1,xxx it gets it in your lungs better,if not tell gp you need 1,but you must keep yourself mobile ,walk whenever and as long as you can,you will feel better then, get out,as much as you can, go round the block wi the dogs and round again,dont mind the neighbours,ignore them,and don't worry,take a bottle of water wi you,xxx

  • yes i do walk almost everyday, i live in a flat up 3 flights of stairs, do this at least 4 times a day, walk when am at work, go on my exercise machines at home, as i turned my spare room into a gym. i do try to keep active, as much as i can,

    x

  • good you do all that,keep doing it, and just wait now till Thursday,ps I do 2 stairs at once ,have you tried it,then run downstairs,thats breathless but its good,dont worry,keep active at all times,good luck,xxx

  • Hi, I was diagnosed in 2010 with Boullis Emphysema, I also stopped smoking as soon as I was told. I was also very breathless for a while, stay positive, with knowledge you will manage to live with Emphysema.

    Take advice from here and do call the BLF and speak to one of the great nurses. Start an exercise programme, speak to your doc first and don't over do things. This is all very new to you so remember gain knowledge on Emphysema, don't Google it, you will get the wrong info, stick to this site.

    Once you speak with a BLF nurse you will be armed with a list of questions for your doc.

    Need anything else just post a question or blog something.

    David1968

  • Thank you David1968 i will call them i am taking all this advice on board. perhaps not as bad as i first thought.

    Thanks to this site

    x

  • Mrs H if you can get up 3 flights of stairs 4 times a day you are doing OK girl.

    Read the threads on here, do everything you can to stay healthy & follow the good advice on here re: diet/exercise/ medications/

    You will improve your lung condition, and you will be able to climb those stairs for years to come.

  • ty xx

  • Stay away from lung irritants especially fag smoke, stay positive, exercise and manage the Emphysema, it's scary at first but you will manage it with the right support and advice.

  • ty xx

  • The others are right, please ring the BLF in the morning. They are the experts and can give you good advice to ask docs. Not only that, they have counsellors you can talk with to help you out of the sad feelings. Take care xx

  • ty xx

  • I have severe emphysema,I found the pulmonary rehab of great benefit,ask your gp for referral.Good luck.D.

  • I have been referred in March just waiting on a date. xx

  • Welcome MrsHobbit. You'll get some good advice on here.

  • Thank you all so much you are all making me feel better already. thanks for being so positive xx

  • good, let us no how you go at dcs,xxx

  • I will the doctors app has been changed to Friday afternoon, but I will let you know how i go xx

  • Welcome to the blf, I was diagnosed with emphysema in 2012 at the age of 41, it feels like a kick in the gut when you're first told. Then you find out more, get used to the idea and try hard to carry on regardless. Keep your chin up.

  • Sorry to hear that Scars1, i know what you mean, cant describe that feeling ! it is difficult but i do just get up each morning and face the day. Hope you are ok x

  • I have had Emphysema since my 30s..I am now awaiting coil op,such a bummer when I have been an active person all my life and now the dreaded disease has got me!!Keep smiling and good luck to you all x

  • Hi Porche296 I hope the coil op goes well for you, thank you and good luck to you too x

  • Thanks hunny,Still awaiting date,and admittingly petrified,but will keep you informed..Hopefully I can help others going through the same...Its an awful disease but keep fighting,slow down a little,and think nice thoughts when the breathing goes down....god bless x

  • That would be great to hear how you get on, very scary i admit. but yes you will help others cope, i know i appreciate everyones advise and wisdom.

    Happy thoughts are not always at the ready, but i do try. xxx

  • Always here for you hunny if you need to chat..We are all in the same boat and a little reassurance from others helps a great deal..Just had nebs,drugs, n oxygen ready to head out to the shops..Thread nurses tell me to try n stay independant..Very hard when panic sets in n my heart races but humming all the way helps lol try it!Got bit depressed yesterday when an old lady of about 80 overtook me, hopefully when I have the coil op I will catch her up lol..take care x

  • yes i know what you mean, it is all good getting told these things but it is hard, i also have many an old biddy pass me lol i am at the stage now i say they are showing off !!! lol

    I have to laugh as my 92 yrs old Gran is faster than me lol she finds it funny.

    Thanks i may take you up on the chats

    xx

  • Just been to Minehead and done a wonderful shop,I had to park car right by door in the disabled,and whoever invented trollies are my best friend! Had a few moments of breathing going down but popped a valium to keep me calm works wonders! My boyfriend wasn't too pleased I ventured out but I wasn't far from the hospital so alls good! Sat on nebs now totally exhausted but proud of myself lol..Here for you anytime for a chat..Take care.Laura x

  • Keep on fighting, never give up!

  • Thank you Jeremy76 x

  • Your all amazing! x

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