Hi im new to this site

Hi i have just found this site today. im on another site also. im 55y and a photographer

I have emphima got told 3 year ago. I was in a car accident in 1985 with lung collapse of 80%..i survived. it was suspected back then i would have copd..ive lived a normal life up until 3y ago..i have a really big struggle with the smokes. i have quit a few times but this time i really have to as my emphysema alligies and now azma have taken hold..im pretty active. denial is a dirty word to me..so i have jumped onboard for support with people who understand were im at..my friend's dont really understand! they try n help me but its not happening to them...they are very active and sometimes I cant keep up.

IM thinking of putting a journal together of my journey as a copd person. I have found we are left to fend for ourself with lack of info from doc and the likes. This is the most scary place to be in terms of 'what do i do now' when will i die how long have i got!

I would like to here everyone's views

Thanks

Jasminrice xx

28 Replies

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  • I have just been told I have copd and alpha 1 and my doctor has just left me to get on what it I don't know anything about it I have had to give up work cos I carnt breath and I can't walk far I am so down at the mom any help from anyone on here would be great

  • Hi donna

    Yes my doc did that to me also..the most scary place to be is not knowing..i did heaps of research asked heaps of questions from others who are in the same place as me..im still learning what to do! i still get just get on with it!

    From what i have learned from others is good diet exercise breath exercises also..stay as positive as possible..i jumped on to 2 sites now..

    LIfe just gets away from u and u forget that there are others to support u..my new fb page i call these sites..

    I left my job also but have been lucky i had my photos up my sleeve..i have rented my spare rooms out to make ends meet..

  • I have learnt more from Web sites too am scared cos I don't know how bad it will get I can still do some things but it takes me longet to do them

  • The same answer applies to you as well Donna. x

  • Donna, have you joined the the Alpha 1 UK online support groups? They have lots of support and info specific to lung and liver affected Alpha 1 patients and can also post you leaflets about the condition.

  • Hi no I haven't thanks for that I will have a look I just need more information about it

  • alpha1.org.uk/

    alpha1awareness.org.uk/

    Both groups will send you printed material for you and your doctors. They also have Facebook pages where you can connect with other affected individuals. They both run information days too, where you can meet face to face. Hope this helps.

  • Yes it will thank you very much

  • Hi nice to meet you. I reckon the ciggies have got more to do with your emphysema than anything else! There is a quit site on here so have a look. They will help you with quitting and saying stopped.

    How long have you got? A leading question. No one can put a time limit on any of us as we are all different and at different stages. It also depends a lot on the individual. Do you know what stage you are? And your lung function? I would guess that you are still at quite an early stage, in which case with care and leading a healthy lifestyle you can slow the progression down and even improve your lung function and have many years yet.

    You need to ask your doctor to refer you to PR (pulmunory Rehabilation), This is a course over 10-12 weeks usually where you learn good copd exercises and it is usually run by a respiratory nurse who will give talks and answer any questions.

    There is quite a lot of info on here, and also the NHS site. Stick to recognised sites and do not google indiscriminately as you will scare yourself to death.

    Also if you are in the UK you can ring the BLF number (03000 030 555) as there are trained nurses there and a benefits advisor. They work office hours.

    Stay with us here and we will support and help you all we can. Most of what I learned is from here. I am sure others will be in in the morning to help. Most lung sufferers go to bed early... x

  • I start my PR as soon as they can get me in..i requested it as i have learnt of other site. yes my stage is early but has declined of late.

    Im not scared to goggle my brother just died from lung cancer so i know what its about..he told me to save myself..and i am! thank you for your help and response

    Jasminrice

  • My lung function was 80% now after 3y down to 70%.

  • Oh also have a look at the Govt.uk site. This will give you lots of info re benefits etc. x

  • Im not in the uk..im in australia and its a tuff time with benifits here.

  • Same here Jasmine. I don't know anything about benefits in Australia though. x

  • Welcome Jasmin, you have come to the right place for help and good advice. So sorry to hear about your brother and good luck with giving up smoking.

    Take care. Xxxx

  • Thanxs..I miss my brother..he was smart.. tomorrow is his send off.

    I have to go it alone now!..tuff call really but im strong and can and will do this..

    He looked out for me brought me a new car so i wouldnt struggle about a crappy car.

  • Be strong for yourself Jasmin and in your brothers memory. What a wonderful man.

    Take care xxxx

  • Well I know what you mean about the docs not being there for us but I wouldn't want to be without one & I'm an X smoker--quit in 2005 & I suffer from both emphysema & asthma and can't keep up with healthy people so go at my own speed but quitting smoking is definitely a must to have a better & longer life.

  • Good morning and a warm welcome to the Group Jasminrice.

    After the brilliant reply to both you and Donna1962 from coughalot2 I really cannot add anything at all..............but honestly - nothing to be scared about, I mean that sincerely, so put that "how long have I got" right out of your head, be positive; come here for truthful answers, sensible and caring help. All of us on here have a lung disease, not the dreaded lurgy:-)

    xx

  • Welcome to the site, as already said BLF can give you lots of advice both in leaflets and telephone. Think a lot of us on here have been in your position, newly diagnosed with little information, so if you have a question there is usually someone who can answer from expereince. So hope to see you again soon.

  • Hi@Jasminerice How are you today. Like you im fairly new to this sie very helpful and friendly bunch of people. I agree with some of the things you have written i keep getting told different things from different doctors. It is scary but we learn to cope i have developed horrible anxieties with this copd i wonder if many suffers gett hem. Good luck with your ournal and chin up I was told there are local groups we can join for chats coffee etc., but i cant find one near me well to be honest cant find one in any area !!! have a look for your local groups Take care and chin up luv Chisx

  • Welcome to the group Jasminrice and Donna1962 :) x

  • Welcome to the group, you will find a lot of help & support here. Please stop smoking, it is the very best thing you can do, truly. xx

  • Hello and welcome Jasmin

  • Hello and welcome Jasmin. You've come to the right place for support, advice and good banter. We all have different lung conditions but are able to support each other by sharing our knowledge and experience. x

  • Hi jasminrice, I think most of us started the same way,I've learned more about my condition on this site than either doctor,nurse or consultant have told me,the beauty of this site is that we're all in the same boat so we tend to understand the little things that worry us too,plus there's usually a few laughs along the way.Sad for you to join but glad too.Hope you feel we help.☺

  • Hi Jasminice, After all my Dr. appointments and emergency visits I have found out that I have allergies ( why it is impairative you quit smoking) and sleep apnea. my cough is much better (advair when needed) and my c-pap machine have been a real remedy and have more energy,(I blamed my heart failure on no energy) I can only say be patient and if you don't feel comfortable with your diagnosis keep investigateingredients until you do. Take care and I hope you can bite the bullet and quit smoking. Nahja.

  • Thank you everyone for your warm welcome!..my brothers send off was amazing. His favourite person was david bowie..and... we can be hero's if its only for one day!😇

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