Learning curve

Hi All, I'm new and an angry person who has just be diagnosed with stage 3 (severe) copd. Knew I was ill but GP just seemed to fob me off, said not to worry about weight, not bad enough for pulmonary rehab etc etc etc. Seen consultant on Friday and he gave me the grim news prognosis and all. Now I just don't know where it is all heading, I will be 60 in January and thought I was going to see a retirement.

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  • " Firstly Hello... and welcome to this very friendly site. Please don't feel angry even though I totally do understand your reasons for it.. For I too was in the same situation as you last May and felt very let down and so lost, for I complained about massive weight loss. but to no avail. I was in pain breathless, then a miracle happened, my Dr's didn't like the government new changes, so sold the practice I was at, and that's when the miracle happened.. that's when the new Dr's sent me for a x ray's a spriomentrie tests. blood tests and the awful news I had been dreading was told to me. stage 4 very severe COPD. fev1.. 27... I was totally devastated. But! I took the news by both hands, I instantly stopped smoking. (not because I am clever) I was too scared too put a cigarette anywhere near my mouth, I lost all of my anger as I saw anger as only hurting myself. and why I already hurting and had been hurt, so let down.. So Annie.. Don't!!! you let yourself down as others have.. only you can help this awful disease not to control your life. It will be hard to start with. but life was never easy anyways, and with lots new people that you will meet in here, in HU....you will grow so much stronger so much wiser. And if you eat a healthy diet. if you smoke. give it up ..you owe that to your self. ask your Dr about pulmonary rehab, you will learn so much from going there. don't look at your life as over.. this is just your new beginning.. embrace it Annie. we are all here to help you Please put all that anger into positive energy's... please keep in touch let us know how your doing. Ask any questions..((hugs)))....Megan.... Oh!! PS .. age is but a number, but for what its worth I am 69 February......"

  • Thank you so much for all the info, been having a hectic time and not too good on computers, but I am learning.

    Have posted about my meds and asked if it is possible to go meds free but lifestyle changes

    Regards

    Annie

  • Don't think it's the end. Don't smoke (if you do), eat well and try to get on a Pulmonary Rehabilitation course and you could last for years. It's not a death sentence. Look after your self and you can help to stop it from getting worse. I'm stage 4 (very severe), and I still get out and life is still worth living. I'm 58 by the way and I've had COPD for more years than I can remember. Good luck and don't despair.

  • Hi Annie I am sorry you have had this terrible news and I don't blame you for being angry! Put that anger to postive use by determining that you will live for many years yet so stuff them!

    See your doctor and tell him/her you want to go on a PR course immediately. Have you got a care package at all like rescue meds (steroids and antibiotics) in case of infection and you can't get to a doctor? If not ask for one.

    There are many folk on here who are severe and are still going strong after many years so with proper care you will live well into your retirement so don't worry about that.

    We are a very friendly and knowledge bunch so come in anytime and we will do our best to help you. Take care. x

  • Thanks! sorry I take ages to respond but life has become hectic!

    A

  • Not to worry. Come back in when you can. I guess the 'hectic' is coz of Christmas? x

  • Hi Annie - I was very angry my husband got Copd at the age of 51 but he is now 67 works full time - we are just a bit slower! Please ring the BLF helpline a ring on Monday - find out what you should expect - the rehab is fantastic so please insist. Annoyingly you will find you have to be quite proactive so please put all your energy into showing them that you can have a great life with Copd! TAD xxx

  • welcome to the site annie,

    this diagnoses is always a shock to the system, and yes, it does make you angry, but,, its far, far from the end, believe me!!, there are many folks on this site will soon tell you that, if you stick around you will get great advice, i have managed to turn my life around with the great help/advise i have been so blessed to receive here. firstly the main thing that helped was stopping smoking , then eating a better and varied diet, keeping myself going the best i can,, taking all prescribed medication , inhalers etc. you should get [if not ask] emergency medication, i,e steroids and antibiotics, take these if you feel bad then phone your g,p.. i have very severe copd, with many underlying illness, and much older than yourself. but fortunately, through the help and encouragement on this site i have learned to live with what i have,learned how to keep things "on track" and learned to be happy with my lot,,, things are never as bad as they first seem,

    lastly if you are not pleased with your g.p change him/her,, ,,

    keep on the site you will be amazed what you will learn, the friendship you will have, and the advice you will get,,, once the anger cools you will soon have a :) on your face,,,feel better and have great company,,, lots of kind wishes ,,jimmy :) xxxx

  • Welcome to the family.

    Cant add anymore you've been given great advice.

    Kim xxx

  • OMG you are an amazing bunch of people! Thank you all for the support/advice/kindness. Yes it is a shock but already have started to look on the bright side; I have a good life, recent news is a blip, I am still alive-not like the poor Aussie cricketer who died (RIP Phillip Hughes and love to his family).

    I do not smoke and when I did many moons ago, I thought I was the bees knees with my gold B & H's and gold lighter. But hey ho now I have to tackle the immediate things, like medication, PR and nutrition.

    Did my homework last night and came across this American guy W.G. Miller who nursed his Mum through COPD and Emphysema, worth a look at his book, which is only on kindle at the moment-How I reversed my Mother's COPD. He advocates good eating and supplements.

    I will be back to see and hear from you all and big than you to you all for the help and support.

    Annie

  • Hi Annieosb, I am just catching upon some post following a short break. Welcome to the site sorry to hear it is suggested pulmonary rehab would not benefit you, as many on here have greatly benefited from it. You get help and advice there plus a big bonus you meet others with the same problem. I am only early stage but have done a course to improve my breathing, but have been away from the gym due to other illness problems which PR don't help. I would talk to the helpline at BLF if I were you. As for retirement listen to the consultant do as he says and I am sure you will reach retirement perhaps not as healthy as you would like, but with treatment ect some improvement can be achieved and life changes made to live with the illness. Never give up hope new approaches are being found everyday to help us lead a better life with the illness best wishes.

  • I have had lung problems all my life and heart problems most of it, got diagnosed with PH 2 years ago I will be 60 next year. I am going to enjoy life and not let my issues control me. They might slow me down but they will not stop me!

    PMA always!

    Be Well

  • Don't worry. You will see a retirement as long as you don't go down the "feeling sorry for myself" road. Attitude is everything. Diet, exercise, getting meds level right, breathing control...in fact everything we are advised to do when we are healthy...but a bit more. Important to keep up your fluid intake and increase it if you can. Sorry, beers, wines and spirits don't count. Most GP's know nothing about COPD and if your surgery has a dedicated COPD nurse, chances are she knows not much more. Your help will come from your local respiratory team....they are the experts. They may be based in a health centre or a hospital but usually have clinics around their area...and they will make house calls. Don't loose heart. Keep in touch and don't read too much into the doom and gloom you may read on hear....remember, these are other folks problems not yours. Be determined. At 60 you have got lots of living to do and unless it's something weird, most will still be available to you. If your job becomes a problem, look at early retirement. Check at what age you can get Pension Credit and take the chance to finish work early if you want. If you love your job and can cope with it once your meds are sorted out, then it's time for a chat with your boss and register as disabled with them. They then by law have to do a risk assessment and make any provisions for you to make your working life easier. Go on....you know it make s sense.

  • Dear Katie, Offcut and Brian, thank you all for the support and advice. It is early days for me and I am just getting my head around it all. I am sure that this is a great find, to have folks with similar problems is just what you need for reality checks etc.

    Thank you all so very much

    Annie

  • Annieosb, We are here with lung problems. I think it's true that we hve all gone through what you are going through now. Pity your consultant only emphasized the negative points. I have had bronchiectasis for 20 years, still alive and promised myself that I'm going to defeat this illness. I';; tell you about it in another post.

    suffice it to say that you can stop some progress of it. Take courage, not very easy at the moment for you, but you can get out of this acute phase. Stay with us to tell us what happens to us. Take care of yourself, this is very meaningful, because doctors can throw statistics at you, but you might make a new healing statistics. They used to say (statistics) that the condition is irreversible. It's now proven that it isn't so irreversible due to the fact that people like you and others fight back. You are not a statistic, you are you, human and with a lot of undiscovered energy

  • Hi Annie - I had same shock as you at the same age. Drs did nothing for months while my chest got worse until I ended up in A&E. I changed GP and got referred to a good consultant, and with CT scans who diagnosed mild COPD. I have a few complications which makes it feel a whole lot worse than 'mild'.. but as all the others say, keep off the cigs (I stopped in1994, symptoms showed at end 2009, diagnosed in 2010!) start exercising, avoid bugs - get flu jab & pneumonia jab if you've not had 'em, eat healthily and take your meds. 4 years on I'm better now than I was then. :) You'll get better than you are now, for sure.

  • Thanks for all your Soul Saving, your post made me feel a lot better.

    Annie

  • It's not the end....so do try and stay positive, even though you are angry with your doctor. Keep joining in on this site, and do try and get on the Rehab Clinic......it's a brilliant course. Take care, and I'll be watching out for your posts :)

  • Thanks Louisiana!

    I will keep posting.

    A :-)

  • Hi again and many thanks to you all who have replied and given me more strength and hope.

    Cannot get an appointment to see my GP till 10th December but emailed him and requested the new medication prescribed by the Consultant, he agreed to do this but as he had not heard of this medication, suggested it may take 2-3 days for pharmacy to obtain. I also requested and urgent referral to pulmonary rehab, his response was to wait till I see him. I responded that had been telling him for over 2 years that I was having great difficulty in walking more than 50 yards, his response was well ok I will refer you but he thinks there is a waiting list of 3-4 months :-(

    Annie

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