Newbie, and scared

I was just diagnosed with moderate COPD on May 22. My FEV1 is 64%, and ratio is 70%. At this point, my CT scans and CXRs are clear. GP referred me to pulmonary Dr. I see him on the 25th. I have an 11 yr old son at home and wonder if I'm gonna be around to watch him grow. I don't have significant SOB, but can't get that deep satisfying breath, and I'm often tired. I sometimes also get a burning sensation in the top of my chest, just below collar bone. Not sure what to expect next...

16 Replies

  • Oh, and I'm only 41...

  • My sister has similar results, she is a never smoker and has a diagnosis of Asthma, I.e. no emphysema or bronchitis. She lives a good life. Like a lot of us she complains that she cannot get a deep breath.

  • Dr said I do not have asthma because there was no change after using inhaler (#s were actually worse).

  • If it means anything my FEV1 is over 100% and I can't get a deep breath. My FEF25 is 60% however.

    Don't get hung up on the numbers, they mean little.

  • Don't be scared! My husband was diagnosed 12 years ago when our littlest was just two - he is still here and we have a very good quality of life just a bit slower than others! Don't Google it will scare you! There are lots of ways to slow the progression down - keep fit absolutely essential and live a healthy life. You will need a flu jab come winter time and a pneumonia jab. But you should be able to have a great life - take good care xxx

  • you have come to the right place ask any question and you will get answers from people that know more than me. ive only been diagnosed since nov. ive learnt more here than any where else. good luck xx

  • My FEV1 is about 18%. I still work,drive,etc.

    I was talking to a fellow sufferer yesterday who i first met a couple of months ago. Like me he has Stage 4. I've had it for 4 years. He's had it for 30. We'll die of old age methinks. The numbers don't mean a lot. It's how you feel in yourself that matters.

  • You'll improve when they get you on the right meds, but some on here would love to have them numbers.

    Burning sensation is probably acid reflux. Are you on Omeprazole (or other antacids)? You should be, acid reflux can aggravate your breathing and/or leave you with horrible mucous, chronic sore throat, rhinitis/sinusitis problem and worse in extreme cases - best avoided.

    Ask/mention it to your GP, try ranitidine (strong over-the-counter antacid) in the mean time, or Gaviscon buts its expensive, or if you have a juicer, carrot juice is very soothing. Don't eat after your tea time meal and avoid coffee & alcohol until you get it sorted.

  • Hi there ,sorry to hear your news,,,,but keep positive ,,,I was 46 when I had first signs ,then in 2006 I was diagnosed with copd emphasyma ,I'm now aged 69 ,I go to the gym twice a week for an hour each day ,I do on average 2&1/2 Klm on treadmil & 3 Klm on the bike and 1000metres on the rower, not bad for my age ,

    My advise is ,if you smoke ,,,,then don't ,,,,,,exersise when possible ,eat healthy and take your medication regularly ,,,,,,numbers mean nothing to me ,I go on how I'm feeling each day ,if you can get your GP to refer you to a pulmary rehab course that would be of great benefit to you,as it's run by nurse specialist in breathing problems and physio's ,they offer information on breathing exersises, fitness and medication. The course is for 8 weeks where we are and if your in employment they have to give you time off to attend the course

    ( at least that's what I was told by someone on the course who was employed ) ,please don think it's the end of the world ,yes you've got an illness but your still you ,and you have the added inventive to keep well for the sake of your son ,I'm sure you will live a full life and enjoy holidays with your son ,so try to put the illness to the back of your mind and live your life to the full ,,,,,then when it does cause you a problem ,,,just deal with it ,and remember it's not the numbers that matter on a day to day basis ( I was diagnosed in1992 ) with asthma and I couldn't tell you what my numbers were then or what they are now ,,,,,,I just keep going anfpd try to be positive ,

    Best wishes ,

  • basically, nanny says do not let it rule your life, just treat it as a minor inconvenience. Well said Nanny

  • I was diagnosed with copd 10 years ago ... thought I was on my last legs as was rushed into hospital with blue light and kept passing out ( I was 46 then ) I don't take much notice of numbers as you learn to listen to your body ... dont worry once they sort your meds out and know exactly what your symptoms are you will be fine and able to cope, you just have to learn to take a more chilled look on life. Your son will keep you young and you will be surprised at how much help he will be if you tell him when your not so good don't suffer in silence.

  • Well said ,

  • If you don't mind my asking, what stage were you diagnosed at. I just woke up one morning with SOB...Dr did test and said I was moderate, FEV1 64%. it's frightening indeed

  • first thing first newbie , dont panic ! Copd is not an immediate death sentence ! there is so much medical and self help out there you will need to check it all out ,find what works best for you and then take control of your illness dont let it control you . I was diagnosed 12 years ago after treating asthma for 3 years . I did much of my own research into the condition and then with the help of the BLF , then a pulmonary rehab course and my local hospital research team , I found a way through what is a bit of a minefield , Understanding the illness was for me a huge step forward, then finding there are ways to cope with it and the support out there for that ( usually your local hospital ) was a great help , My policy was/is dont tell me what I cant do but what i can do , ok you may not be able to run the local marathon but you can walk it ! look forward to life ! with determination you have a lot left yet .

  • You will more than likely be watching your grand kids at their first day of school. There is so much you can do to slow the progression of this illness down. The best thing to do is ask and ask and ask again whatever you want to know. everyone here is happy to help and no question is too silly so worry about that. Don't go looking things up if you can help it ask here or your Dr as those sites always give the worst outcome. We live it on a daily basis. When you see your specialist he or she will get a lot of tests organised these are not done all the time so don't worry but every now and then to keep an eye on things. It also sets the ground for what your meds will be. Get fit and keep fit is one of the most important things along with stop smoking if your are and take your meds properly. I was diagnosed in the year 2000 but didn't get to see a specialist till 2006 and I wasterrified but I am still here and I live a great life I have 6 grand kids and am involved in their life all the time. I travel a fair bit even overseas I just get an oxygen concentrator to take on the plane and no probs. I am not on oxygen yet 24/7 but even when I am I still intend of living my life. Good luck

  • Try not to think that way - you have a looooooong way to go yet. I was diagnosed over 12 years ago and I am still here (very much so :) despite my ancient age) Take care and enjoy your life. :)

You may also like...