Hi All,does any one know how long you have left when given END STAGE COPD ?

Hi to you all,I whent to my G.P. 2 days ago,He told me I was at END STAGE COPD,I was to upset to think to ask him, but Dose any one know approx how long do I have left ? I know I should ask my G.P.But I cant see him for another two weeks,so I just thought I would ask the people who may know more,or is this a silly question.many thanks...Stevo584.

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  • Hi stevo584 im suprised your Dr said that to you ,theres people ive heard about on here that have been at end stage for 20 yrs or more ..how bad are you ,can u still get around etc . im 50 and im severe stage and was told if i gave up smoking and keep active i could slow the desease down. do u get lots of infections? certainly not a silly question i,d be upset to x

  • Hi Steve...You must ring for an appointment to see your dr...of course you are worried and upset being told that...who wouldn't be ? :( Stress and worry will not help your condition...never mind 2 week appointments you must see him now :)

    As Bock said...end stage could go on for many years.

    Please see your dr and good luck x

  • A think doctors are always best being truthful ... But like @bock says there as been people at endstage copd for 20 years

    All the best and try not to take it all to hart is hard facing our own mortalarty ... I went from having infection to astma to mild copd to chronic within in year and a half prev i was fit and well

    We can only make the best of what we have been delt

    All the best :)

  • Hi

    I am available on the helpline on 03000 030 555 if you would like to chat

    Regards

    Vicky (nurse)

  • I need some one to talk to my mom has copd end stage and have no one to talk too.

  • Hi

    Please feel free to give the emotional support service here at the helpline a call if you would like to have a chat about the non medical side of things, either now or in the future (iva telephone or email/private mesage), there is also a lot of support here on the forum so please feel free to ask rather than suffer in silence.

    Take good care of yourself.

    All the best

    Heych

  • I am, apparently, end stage but that's just a number. I seem to be fitter than some on here who are classed as moderate or severe stage. No offence meant but I don't have the bronchitis side of it as such. It's how you feel that counts. A doctor telling you that you have end stage is a bit wrong in my opinion. Stage 4 sounds better. Here's a link that gives a good explanation.

    copd.about.com/od/copdbasic...

  • I do wish doctors would be a little more sensitive to their patients' emotional needs before they make such sweeping statements stevo. It's so easy for them to be 'medical' and not realise that they've frightened their patient to death, so much so that questions are forgotten and the patient goes away thinking ....................... and not knowing!!

    I've been Stage 4 for quite a while now and have no plans to 'pop my clogs' for a long time yet. I still get out and about, I'm not on oxygen, and I consider myself to be leading a relatively normal life, but at a slower pace than healthier people.

    Do please ring the BLF Helpline as suggested by Vicky and Heych above, I think they will be far more useful to you now than your doctor is :)

    All the best for a long and happy life stevo :)

    keep on keeping on ...............

  • Hello Stevo, I agree with Dazi, a doctor should always be truthful. However, it's clear that a lot of GP's know very little about copd and even less about "bedside manners". To tell you "end stage" and not explain further, or give you some printed information about your condition, is terrible, it sounds like you're going to expire any moment! I'm also end stage, severe stage, stage 4 (however it's labelled) for quite a few years now and am not planning on chasing worms any time soon! All the best. George

  • Hi everyone, Ive just been told wednesday 6th march that ive got COPD mild and not sure what to excpect? im bad with asthma and have good and bad days thanks for reading ;)

  • Hello kazz60 - you'd be best posting your question as a new separate question as people may not notice it here. Just click on "as a question" at the top of this page and hey presto! Best wishes, George.

  • well i was told i had about two years to live in 1984, i was 77 last month so do a bit more research and look after yourself and you never know, i was devastated at the age of 49 when my doctor read the letter from hospital after extensive tests but i plodded on, i had stopped smoking 16 years before ,so you can imagine my surprise as before i felt so fit and was working every hour i could,you can imagine how frustrating it was to all of a sudden struggling for breath bu you have to learn to live with it. VERY SLOWLY, good luck Brian

  • Hi, my husband was told he was end-stage last summer, he had been in hospital many times with pneumonia and that is when we started to get help. A Matron, physio, dietician all came to our home, he has emergency antibiotics, steroids, nebulisers and 16/7 oxygen. He is now better than he was before he went into hospital with pneumonia last year, in fact, he is starting Pulmonary Rehab in the summer, something he could never have thought about doing last year. He has started buying CD's again and magazines whereas he used to sit on a lump, moaning and groaning and making my life absolutely miserable, he is still a moaning Minnie but at least he is starting to enjoy life again which makes things a hell of a lot better for me. He has also now been told, because he is a lot better, to sleep in his oxygen but when he is sat down there is no need to use it, but to use it when he is walking about.

    So as far as I am concerned, end-stage is just a word, we thought it meant terminal but it doesn't, you can live for many years after diagnosis depending on how you look after yourself, which is the same for any other person.

    Take your medication and exercise, and when you feel an infection coming on, take your antibiotics and stop it before it gets a hold, that is what we do now and it works, we are starting to have work done on the outside of the house and garden, something he refused to do before as he thought he would be dead by now and I would have to sell the house.

    He still grumbles a lot, but he always has, even when he was a young man he was a miserable g## so I have told him I will strangle him with his oxygen tube and stick his 400 oxygen cannister where the sun don't shine if he doesn't shut up.

    Best wishes, it will soon be summer and we can all sit out in the garden or outside a pub and enjoy the sunshine.

  • Oh thank you for that response Sweething I hope lots o people read it.

    Good information and cheery and amusing, ( sorry hubby ),

    I'm end stage, came out of ICU three years ago and had a great 69th birthday yesterday. Wear a smile and exercise - when I can't exercise I just wear the smile.

    All together everybody, lets just, keep on keeping on.:-)

    Chris

  • A woman after my own heart sweetthing .....I have been home all day on my own and your post made me laugh out loud. It reminded me of when my mum was looking after my dad under the same conditions. Maybe you should do a daily diary to give us all a laugh

  • Hi. Fantastic, happy birthday, I was 70 years old last month and luckily am as fit as a fiddle, have to be to look after him indoors. You are correct, exercise when you can and be positive, an healthy person can get knocked down by a double decker bus tomorrow so no-one knows, whether healthy or not how long you have got left on this planet. Just live every day as it is your last, I do, I am still buying perfume, jewellery and clothes which annoys grumpy, but luckily, he doesn't answer the door to the postman now, too idle, so doesn't see what is delivered, I have got very good at hiding things as he hates spending money.

    Best wishes to you, I hope you had a great birthday.

  • Hi Sweetthing,

    Very pleased to see your sense of humour has returned after all you have to put up with. I hear the outside lane of the M1 is a great place for sightseeing!. Keep smiling.

  • i am end stage and have been told at the most a year but i am a fighter and i dont give in i think that gives you the best chance of defying dates and prognosis for the longest time, i was dnr until i had anaphalactic reaction and stopped breathing i was resusitated due to it being caused by meds but dnr now removed and i will decide infection to infection how i want to be treated,and when i have found no improvement and antibiotics show no improvement i will know when it is the end, good luck and dont worry it sounds like you are at the beginning of the end stage which can last years, but call the dr and put your mind at rest.

  • Hi Steve, I asked this very same question. I was told end of life really means that there is no more medication available and I am now using oxygen as and when while I wait hopefully for a lung transplant. Listening to everyone else I believe you just have to get on with your life as best you can. Good luck. Susie Q

  • my dad was told by his doctor yesterday that he is the finally stage of copd. and tht there is nothin more they can do. hes 60 and he is on oxygen he hardly ever gets up bc it takes his breath. he takes everything in him to make it to the bathroom. he hardly eats. the doctor says thts part of the last stage of copd. and i was just wondering. does tht mean hes not gonna live much longer. could he possibly die.

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