How long before I die???

I've been plagued for 3/4yrs with one chest infection after another. (I am a smoker) I've had more antibiotics and steroids than I can count, but they've never really gotten rid of the problem. I had the spiro-thing test and they said I had asthma. (At 44yrs old?? ) Then more chest infections. This has been the situation for about last 2yrs. In that time I've had 1 more spiro-thing. I was given ventolin and a purple inhaler. I've never seen an asthma nurse/clinic. Just told I got asthma and given inhalers. That's it. Then following yet another chest infection, a GP came out; said i had COPD, changed inhalers then left having given me 'script for more antibiotics etc. It got worse so two weeks ago I called GP out. A new guy turned up who I've never seen before. Yet another script for antibiotics, double dose of steroids (they've always given both) and he left. His parting shot was, "you've got emphysema." No info, no explanation, no follow up, nothing.

I'd never heard of it so I looked it up on the web. All the stuff I read said its incurable, it gets worse and then you die!! It said about being seen regularly by a clinic, different meds, learning to cope at end stage with the right support, going on oxygen etc etc!! But I've just been told I've got it and then nothing. How long before I die? Does anybody know? I can't get my head around it. The GP said I've got it and didn't explain anything. I'm scared. Can anybody help me, please?

20 Replies

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  • Hi there april 2nd this month I was also DX with COPD I also have lupus sjogren's Hughes Syndrome and many other illnesses please don't worry I know it's a shock have you been put on any medication I was put on Spiriva once a day I am aged 56 and I live day by day like most people with debilitating illnesses I am here if you ever need a chat x

  • Hi DizzyRose.

    I'm not surprised you are in shock, your doctor could have explained things a bit better and you need further advice. I suggest you speak to the wonderful nurses on the BLF helpline. The number is 03000 030555 and they are there now.

    There are lots of people on this site who have had copd for years and are still going strong. Just because something is incurable, it doesn't mean it will kill you. I have emphysema, a copd condition, and it doesn't stop me.

    The only thing I would add though, is you must stop smoking, that is the one thing that guarantees that it will worsen. It's not easy, but many of us have done it with help and support. Some have done it 'cold turkey' (not me!)

    Avoid unreliable and foreign web sites. Stick to the BLF, NHS choices etc.

    Ring them now, and keep in touch with everyone on here.

    Lynne xx

  • I' sorry you are struggling without the proper support. Talk to your GP, if you do not get the help you need, change your GP, you need to be referred to a respiratory consultant & have a proper lung function assessment. You should be offered help to Stop Smoking, referred for Pulmonary Rehabilitation. It is a question of how you 'Live with your condition' I have been 'living with severe COPD for over 5 years now, I have been on oxygen for the last 3 years.

    The most Important thing is to Stop Smoking, Exercise, Eat a good diet. If you can get on a Pulmonary Rehabilitation course this would help you to understand & manage your condition to improve your quality of life.

    Best wishes

    Jo :-)

  • Hi, COPD covers emphysema and chronic bronchitis, you can have either disease or a combination of the two. Do you know what stage of emphysema you are at? There are people in this forum who have had the disease many years. I'm classed as very severe at 20% lung function and was diagnosed 20 years ago. I'm not planning to go anywhere just yet! The first and most important thing you need to do is stop smoking right now, otherwise your disease to progress far more quickly. Try to maintain a health lifestyle, eat sensibly, exercise and, together with giving up smoke, will give you many more useful years. But the one thing I can't say enough, you must give up the cigs! It''s terrible you've been given no info by your gp, it seems to be very common. Does your gp's practice have a copd nurse, many do, they hopefully be able to give you more information. Here's a link to the British Lung Foundation re copd:

    blf.org.uk/Conditions/Detai...

    You will see the categories "Overview, Causes, Symptoms, Diagnosis, Treatment, Living with" at the top of the page, just click on each of those to go to the next stage.

    Try not to trawl the internet for info, the BLF doesn't recommend information from countries outside the UK.

    You will no doubt get lots more replies to your question and you will soon find yourself knowledgeable about your illness. And give up those fags!! Libby

  • Change your doctor ! I did and I am so much healthier for it.

  • Nothing I can add really to the above. Try to stop smoking, ask to see a consultant and ring the BLF helpline. Good luck.

  • Hi Dizzyrose

    This must have been a huge shock for you - when a person is diagnosed with a condition you would expect to be told of this, informed about what the condition is and also to give you an opportunity to ask questions and support to help you understand it.

    COPD although not curable the syptoms can be treatable. We know the best thing to help slow down or stop the progression is not to smoke (this can be easier said than done). You would also expect to be seen by your nurse or GP yearly for spirometry testing and to also check your inhalers are working for you, your technique is OK etc. If you were having problems with your inhalers or your condition was not under control you would expect to be seen more regularly.

    As others have rightly said the internet, whilst a wonderful source of information can also have inaccurate information and can be a frightening place.

    There is no specific life expectancy with COPD we use in the UK, despite information on the internet saying otherwise. It really does depend on the person.

    We have lots of ways we can help you with this, please give us a call on 03000 030 555 - we have nurses, welfare benefit advisers and a counsellor - we can also arrange to send you a COPD pack with lots of very useful information in it.

    You are not alone in this Dizzyrose, we are here.

    Cheers

    Jo

  • Lovely response Jo. x

  • Well thats made me feel better Jo and I was diagnosed over a year ago.

    Thanks

    Kim

  • Hi DizzyRose,

    Sounds not unlike my situation. I was diagnosed eventually after about 15 years with pulmonary sarcoidosis but my symptoms weren't too bad just coughing a lot then very breathless then all of a sudden they said I would need oxygen 24/7, no explanation apart from my levels were low no-one explained this would be life changing ie. can't go anywhere without making sure I've got enough oxygen in my portable cylinders. I, like you wanted to know if this 'thing' we all have is life threatening but didn't get too much information. On the plus side I read an article about emphysema which said if you stop smoking your chances of improving are doubled, I know it must be hard to stop (I have never smoked) but have lots of friends who have struggled with over the years. Hope this helps a little bit.

    Liz x

  • Lots of good advice, dizzierose. I cant add to it but wish you very well. Love Annie80x

  • Hi Dizzy Rose.

    I have no idea how long it will be before you die and I don't suppose your doctor will know that either, 'it' being an unknown quantity.

    If you continue to smoke you may bring the date foreward sooner than need be, continuing to smoke can lead to more lung infections as a result of further lung damage. If you stop smoking you could delay the date of your death, help stabilize your condition so you don't keep getting lung infections and help preserve your lungs, health and quality of life. To some degree the death date can be influenced by what you do from here on.

    I would ask your GP for a referral to a respiratory consultant and also referral to a pulmonary rehabilitation course this will give you the information you need to help preserve your health and lead you toward a more enjoyable future than you have been experiencing throughout the past two years.

    Wishing you every success for the future, in stopping smoking and learning to manage you symptoms, hope you can get on the pulmonary rehabilitation course quite quickly.

    Take good care. D

  • Hi dizzierose

    I can't add much to what everyone else has said except none of us know how long we have got. Just that us lot on here are trying to stay around for a bloody long time if we can and that is why we support one another.

    Look after yourself

    Janet

    xxx

  • Hi I have been smoking for many years and was diagnosed with asthma about 25 years ago when I was in mid 30's. The doctor said it wasn't caused by smoking but could have been triggered off by it.

    My first chest infection following a cold was back in 1986. I coughed and coughed for 6 weeks then eventually went to the doctor. I had never heard of chest infections before. Ever since an increasingly higher percentage of my colds turn to chest infections and I have even had them without the cold!

    I was diagnosed with COPD - mild about 3 years ago then 4 months ago was told by the asthma nurse that I was just out of the COPD range now and before it was probably poorly conrolled asthma. I have asked if I have emphysema but am refused an answer on the basis it all comes under COPD now.

    But you should be checked to see how severe your illness is and at the very least you should be having six month reviews with a COPD nurse to check your breathing levels, do blood tests and your blood pressure etc. I still get that even though I might or might not (ha ha) still have COPD.

    Go back to your doctors and ask for the information you require and any checks that need to be done. Its disgraceful that you are left without any information or the offer of further tests and treatment.

    As for how long you will live - how long is a piece of string? It depends on a number of factors - luck, severity and type of your illness, how you look after yourself, and at the risk of sounding hypocritical, packing in them 'ole fags!

    Many people with lung deseases can live for many years and have a normal lifespan with a few modifications such as learning to take more time doing things and looking after yourself.

    Hope this helps.

    Bev x

  • Big 'Thank you' to everybody that's answered my question. You've all been very kind.

    At the bottom of this page it asks that you be honest etc and so here goes......I used to be very fit and very active and had a job that required me to be both. I was injured at work and have been registered 80%+ disabled since that happened. The main injury was to my spine. Aside from that......or as well as that....I have mental health issues. They were quite easy to hide/deal with etc. until the accident. They get quite bad at times now. I was under mental health services for 16 years but after a really horrendous set of cock-ups by them; which saw me locked up in a secure hospital, 300+ miles from home; I totally disengaged with them. I managed to get released following an appeal and have been "going it alone" ever since. I chucked in all the drugs they'd put me on and I've been copying fairly ok, until recently. One of the main issues with my 'condition' is depression. I have gone back onto an antidepressant, but under my GP. I will never, ever go back under a shrink again. Ever. The abuses meted out by the whole system is disgusting but nobody will listen. After all, we're all crazy, aren't we, so don't get believed. Anyway, I digress; when I wrote in with my question, I was feeling a bit 'low', and was quite frightened. Now, though, I just don't care. I'm gonna die at some point and to be honest, it might as well be now. My whole life has been an uphill struggle from a very, very young age. I was in Care from the age of 10yrs until I left at 18yrs. That left more scars than I care to count. As did the years before I got dumped into the system!! Then the job/accident etc and the mental health racking up to 'total loony'; now this. So I really do thank each and every one of you for your kindness, but I think its just "Life" telling me, once again, that it doesn't want me around. I'm too tired to argue with it this time. I have no family to turn to. No friends either. I do have my exhusband. He comes round to stay a few days a week but he's not very good at coping with me, or being very supportive, with anything other than the physical aspects of my health. I just wanted to explain why I'm not scared any more and to say sorry for wasting your time.

  • Hi DizzyRose, so sorry to read of your sadness and poor health but you are not wasting anyone's time. People come on here for a reason and that is to vent their frustrations about their illnesses and other things but also to be very supportive to others. I care for my hubby Pete and thought I was alone until I came on here and realised that many people are so much worse off than either myself or Pete and it has done me so much good. You have had a very difficult life and difficult times of late so it is understandable that depression has taken hold. Please do not give up on life but instead, stay in touch on this site and with the BLF as we do actually care about one another. I do so agree with you regarding mental health in this country as my MIL has dementia and nobody really wants to know. It is disgusting how mental health is handled (not) and it needs to change pronto. I do wish you well and please come back on here very soon. Thinking of you. xxx

  • You have to give up smoking and the only way to do this is stop and I know its not easy but you are not going to start solving your health problems until you do it, because my husband and I did it, the cigarettes are the biggest problem you have at the moment. My husband stopped smoking 25+ years ago and has had many problems and goes through good and bad patches. There are some infections that are difficult to eliminate have you had any sputum tests to find out which infection it is ask your gp but he will be more helpful if you can stop or cut down on the cigarettes that part of it is in your hands. This is not what you want to hear but it is the fact.

  • i was a smoker for 40 years, and after my last chest infection in February i managed to give it up. VERY difficult, and i still crave , but i am finding E cigs very helpful. They take that craving away. I understand 100% how almost impossible it is to stop smoking, but i must admit, i have felt a lot better since i stopped, and mentally, because now i know im no longer adding to my copd by smoking. You would benefit if you could stop. i hope you get sorted soon, and the help you need. Youre not alone, stay positive.

  • I am cutting fags one at a time and it is working. ..I dont miss the ones I cut out and often forget to smoke my allotted number :) you can do this too ... you have faced worse and you are brave. Keep looking at tomorrow and enjoy something each day. Xxx

  • Sounds like you need to switch doctors and get one that COMMUNICATES with their patients about the illnesses. Don't waste your precious time with the dummies. COPD/asthma seems to be like most manageable illnesses; you simply need to amend your behaviour and habits in order to make an improvement and maintain order.

    Exercise is also important as we all sit around too much and that only aids the disease, so get up and move.

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