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Just been diagnosed with COPD, still in shock

Posted , 7 users are following.

Pixi
Pixi

Out of blue been told I'm already at stage 4 even though never been mentioned b4. Went to different surgery whilst away, they are the ones that jav picked it up although i hav had very bad boughts of not been able to breath. Thought it was weather and Asthma flaring up. This news has floored me all I'm reading is negative, I'm 45 but feel 80. Anyone got any positives?

0 likes, 12 replies

12 Replies

  • Nanny1086
    Nanny1086 Pixi

    Posted

    Positives coming your way ,,,,i was diagnosed back in 1992 ,,,I'm now aged 69 (70 in jan) and I go to the gym twice a week and regularly do 2&1/2 Klm on the treadmill ,3 Klm on the bike ,3 Klm on the hand bike ,and 1000 meters on the rower,,,,yes I get chest infections ,,,,yes I've been admitted to hospital several times even a spell in ICU ,,,,,I've had afew falls,that broke a few bones ,done pinned and plated ,

    ( found out it was due my blood pressure not being regulated properly ) I also have Osteoparosis ,under active thyroid,and Bronchietis ,,,,,,

    i found out about my food when I was blue lighted into hospital back in 1992 ,the consultant asked if I smoked ,,,,yes I replied ,,,,wrong answer he said the next one could kill you ,,,,,,needless to say I never had another cig greet ,thank god ,,,,

    the best advise I would give is if you smoke then STOP , and ask your GP girl a referral to pulmary rehab ,it's run by copd specialist nurses and physio's ,light exersise ,and education about medication ,etc etc ,I started rehab in 2008 and the nurses are brilliant ,if you go ,,you will not regret it ,

    don't think this is the end of your life ,,,it's what you do now you know that counts ,don't sit in a chair saying poor me ,,,get up and go for a walk 

    and enjoy the days when you feel great ,,,,and rest up when you feel poorly .its not the end ,,,,,I intend to be here for  a good few years and spend quality time with my daughter and 12 year old grandaughter ,I enjoy going to the theatre with them ,and out got meals and last year ( and many other years ) we went to wimbledon to see the tennis , and we stayed in London for a week ,we went on a trip up the Thames ,round the British museum ,tour on the big bus ( on & off ) and went to see ,,,,mama Mia which was brilliant ,,,,,so live life to the full and make the most of every day ,

    best wishes, 

  • Seahorse
    Seahorse Pixi

    Posted

    Nanny1086 is quite right. Firstly you definitely, no question, need to STOP smoking. Then you're on your way to a good life again. You must take good care of yourself. Doctors rarely recommend vitamins but I swear by them. Not the cheap ones, but the expensive ones you get in a health food shop (ask advice in the shop). Also healthy eating - lots of fruit & veg and cut out the rubbish. Walk every day and do breathing exercises. Find your nearest Breathe Easy Club - they are excellent. When I was diagnosed, it was a wake-up call and I have taken better care of myself ever since. Remember that medical science is advancing rapidly and there's no reason why you shouldn't lead a long and active life - okay, maybe you'll be a bit slower or have the odd time when you don't feel so great - but if you take care of yourself you should be okay for many, many years. Exercise and healthy eating really are the key.
    • Pixi
      Pixi Seahorse

      Posted

      Thank you for yor comments, indead u seem to be living a full happy life regardless of the health issues u r living with.

      The breathing exercise class and rehabilitation class I hav not heard of but will chat with the Gp wen I'm back in 2wks.

      My % is very low as i said the nurse said it was unusual this has been left t get so bad that the damage can't be undone it wont get any better. But they will try changing my inhalers as the last six lots of antibiotics & steriods and the ones I'm on now are nt helping. Ive never not been able t look after myself. I care for my elderly parents who hav had health issues themselves, who r also tryin t ajust after 2 strokes and the on set of dementia. Now their tryin t take care of me, i dont hav anyone else!

      I hear the stop smokin is a must however if the damage is done is there any point stopping. seems that ive been so bad for nearly a year i cant see any light am i ever goin t b able t walk recreationally again me as a person am known for always rushing about multi tasking get bored with sitting v.quickly and this disease has taken that away I'm not that person anymore so who am i? Another no. Who suffer C O P D.

      Yes this may sound like i feel sorry for myself, give me chance i only found out 6 days ago and needed to reach out my nurse gav me this website to look at & its first time ive written a comment or joined any kind of forrum so this is a biggy for me.. Hope I'm doin this right, didnt no if t send a message individually to the replies ive received. So this is to say thanks for all yor comments.

    • jude65855
      jude65855 Pixi

      Posted

      Pixi, the damage couldn't be undone no matter when you are diagnosed, but continuing to smoke will not only shorten your life further but also restrict it unnecessarily.

      I understand your difficulty in slowing down:  one of the most important if not THE most important thing I learned at rehab apart from the breathing exercises was that you can't 'SOLDIER ON" with COPD because it'll just take you longer to recover when you inevitably get breathless.  I learnt to monitor my breathing & energy levels and to stop at a certain  point, breathe and wait until I can get moving again.

      I don't have anyone to look after me either, my daughter is busy and not particularly supportive and I've had to learn to ask friends and local support agencies to help me, which I found very hard as I've always been independent.     You may have to think about alternatives for the care of your parents because you're going to need to focus on caring for yourself if you want the rest of your life to be worth living.

      How low is "very low" by the way, or didn't they actually tell you the percentage of loss in lung function?

    • Nanny1086
      Nanny1086 Pixi

      Posted

      Don't say what's the point of stopping ,,,,,read what everyone on hear is saying to you ,,,,JUST STOP SMOKING ,,,,you will be with for us much longer ,,,,yes damage is done ,,,,but don't do any further damage ,,,,look at the full lives we manage to live, ,,,take heart and encouragement from for your fellow sufferes ,,,,,,,
  • jude65855
    jude65855 Pixi

    Posted

    I'm sure it's been very scary for you to receive such a diagnosis.  Did you ohave a spirometry test and what percentage is your lung function?   In my opinion, that's far more meaningful than the stage terminology.

    I have 70% lung function, which hasn't decreased in 3 years because I went to rehab and do the breathing & other exercises, eat healthily and use prescribed medication.   I was told at the time I was in Stage 1, but some authorities call anything below 80% Stage 2.

    Pixi, COPD is manageable if not curable.  What have you been prescribed and can you get yourself to rehab ASAP?   Plus of course, stop smoking if you're a smoker and stay away from other people's smoke and other pollution

  • Jacqs53
    Jacqs53 Pixi

    Posted

    I am 62 and was misdiagnosed with asthma in 1994 - it should have been COPD!! I have tried many times to stop smoking as my mum died from COPD when she was 67. She didn't stop smoking and ended up in a wheelchair with oxygen tanks. I have been stopped smoking for almost 6 months now with the help of Champix and no longer need these. Yes my breathing gets bad when I exert myself and I can no longer carry heavy shopping but I have bought the dreaded shopping trolley!! I am still in full time employment and go swimming with my grandkids every weekend. We also do lots of other activities and as long as you take all of your inhalers and accept that there are some things you will not be able to do - ie run a marathon (never had any inclination!) you could live for many many years, You must STOP SMOKING!!  COPD is incurable but by stopping smoking you don't make it any worse and can carry on as normal. Hope this helps
    • jude65855
      jude65855 Jacqs53

      Posted

      Good reply Jacqs, I hope Pixi follows your advice about stopping smoking.  There's so much varied support & help around now, people used to just do it cold turkey with nothing to ease the withdrawals.

      Honestly, not judging anyone, but I don't understand how anyone with asthma or emphysema or any other COPD can actually smoke:  I find my breathing adversely affected if I even pass someone smoking in the street

    • Jacqs53
      Jacqs53 jude65855

      Posted

      I smoked from the age of 13 and I have tried everything from acupuncture to hypnosis. The problem was that I really enjoyed smoking and I always went back to it. I also smoked cannabis in the evening before I went to bed as I found that it eased the arthritis in my spine. However, on Jan. 1st this year I started taking champix again but didn't cheat - no cigs and no cannabis and now I feel so much better. Obviously the copd is no better but I expected that. I can retire from work at beginning of November and I would have preferred to continue working not only for my finances but because I enjoy my job. However I want to spend quality time with my grandkids so rather than carrying on working, I am going to relax and do all the things I've wanted to do for ages. Life is good - there are so many people my age who aren't lucky enough to be able to actually get out and do things - I have a sister who is one year older than me and she has copd but also has early onset alzheimers so I consider myself very lucky.
    • Nanny1086
      Nanny1086 Jacqs53

      Posted

      I also smoked from a young age 15. But back in 1992 I was blue lighted into hospital with my first ever asthma attack ,the consult asked me if I smoked ,yes I said ,wrong answer he said ,THE NEXT ONE WILL KILL YOU , I ever had another one, I honestly believe if I hadn't have stopped then I wouldn't be here now at age 69 ,I went cold turkey ,I used to smoke  about 20 a day, so I f if can do it ,,,anyone can ,
    • jude65855
      jude65855 Nanny1086

      Posted

      good for that consultant I say!  Have you ever got back to him to thank him?

    • Nanny1086
      Nanny1086 jude65855

      Posted

      Hi ,,,,remarkably I never saw him again ,( he's retired)  but I thank him every day of my life ,

      he was an old fashioned doctor who said it as it is ,no pussy footing around ,

      I owe that man for saving my life back , we need more doctors like him ,

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