Not as excellent as I thought!

I posted recently that my FEV1 has increased from 30% to 53%. However Ive Just seen consultant and not such great news as I thought. My 53% is an improvement but I was told not to take too much notice as my history shows big variations (with some ppl apparently it does) so it could be misleading especially as my oxygen level has reduced and my gas exchange deteriorated so I'm now retaining even more CO2 :-( they think this is damage from my last illness. But hey, it is what it is and currently I feel very well! :-)

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  • Well that was a bumpy landing for you! But how you feel is the most important,don't worry about the numbers.I remember my Doc.telling me,that when I had asthma,the Fev1 was important,but once it was confirmed to be Copd,the Fev1 isint Realy important anymore.

    Like you,my gas exchange detiorated,& the C02 has become more retained.

    Just enjoy feeling well,& alive!

    Breathe easy,love Wendells xxx

  • Im confused by this Wendells as my understanding is that FEV1 is the measurement relating to COPD, while peak flow is the one that relates to asthma. (I have both) So not sure what your doctor was meaning.

    But i agree that how you feel is very important :)

  • Hi,my GP told me that,seeing Specialist next Wednesday,will ask him about that,& let you know what he says! xx

  • yes, i'd be interested - i can't understand why anyone would say that FEV1 doesn't matter once your copd is confirmed.

    Good day to you Wendells, though guess its night now i think of it :)

  • well said wendells its how you feel and only ourselves know that

  • It's how you feel that is really important. The tests are just numbers. Hope the sun is shining wherever you are x

  • agree with you chris3 for sure

  • Big Asthma component moving the FEV1 around helps with the feeling good managing the oxygen saturation becomes more important with lower gas transfer. Fingers crossed it could have been a touch of hyperinflation that will clear now the FEV1 has picked up with some working alveoli coming back on stream :-)

  • fingers crossed for you that it keeps going up.

    Be Well

  • I've had a similar experience in that although my ratio had increased at my last check my FVC/VC is now a lot lower so that my FEV1 has remained the roughly the same my overall lung capacity is steadily declining.

    How this affects my diagnosis remains unclear to me and, as I have never seen a specialist due to the fact that the GP I see in surgery specialised in cardio/thoracics before becoming a GP, my time with him is limited to a 'normal' appointment length and whilst this may be enough if this was my only health problem, I also suffer from schizo affective disorder and chronic lower back pain, so I never get around to discussing anything in depth with him. He does, however, consider me to be in the 'moderately severe' category.

    Glad you're feeling well despite everything. Long may it continue,

    Lorraine

  • Thanks for all the replies. Like you Lorraine still trying to understand the implications. Although I'm well at the moment I know it can change at the drop of a hat and, like most of us I suppose, I live in fear of another exacerbation. They've been so bad previously that the thought of being even less able to withstand them terrifies me. If I die, I die, but please please not that way. Oh dear this sounds terribly negative now! I feel good :-) but just fear more of what I've had with less ability to fight it and apparently not a thing I can do about it.

  • Oh! And the 'stages' seem useless to me! A few years ago I was mod to severe then I became severe and now apparently I'm moderate - rubbish! There's been a continual decline. Labelling might not matter but it does when reapplying for Motability I bet!

  • Yes...indeed! It's possible that, like me, your FVC has declined more than your FEV1 making the ratio calculation about as much use as a chocolate fireguard. That's why I requested the actual reading figures last time I went because I knew it had gone down cos I am a gadget freak and have my own Piko6 spirometer at home! ;)

  • Oh and BTW...you don't sound negative...just voicing something that most of us fear. The hard facts of our transient existence. :(

  • Haha and there I was thinking I was OTT with my oximeter, peak flow device and blood pressure monitor! :-) I have all the figures - a print out of all test results - but understanding more than a couple of them is proving tricky!

  • There you go see, you're not alone with your obsession at all! lol ;)

    If you let me know which you're struggling with I 'may' be able to help you?

    Going to the GPs forearmed with your own data can prove to be invaluable, firstly it shows them that you're showing an active interest in your health and secondly you can compare readings if necessary to recalibrate or update your equipment. At my surgery they have shown me so much respect for providing my own data tracking.

    Let me know if you need help,

    Lorraine

  • My partners FEV1 has been between 12% and 16% for the past 6 years but he still enjoys life. 53% is excellent focus on how you feel not the numbers. It's difficult I know but everyone is different and if you are feeling well that's great :-)

  • My husband has steadily declined over the last ten years but we have decided to forget about the numbers - it matters how well you feel. Apparently he is now very severe with a FEV1% of 27% - he is still working full time, we still go out and about and enjoy life. PLEASE don't get hung up on the numbers - they only matter to the medics when you are ill, enjoy your life as much as you can! Lots of love TAD xx

  • And that's all that matters you feel quite well at the moment, why cant they just be up-beat for you. You enjoy.

    Kim xxxxx

  • I am same 15 -30 -40 up and down now I only take notice how I feel trawled internet for hours and hours for information on copd finish up with head full of candyfloss

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