Good news I think?

Not sure really.oxygen assessment showed it would,nt help but what will?Don,t know if I can carry on as I am it,s such hard work just to breath.Found out my numbers....fev..0.57 fvc..1.76 19% and46% respectively tlco(can,t remember what this is)...26%.So not looking too good really,they don,t have Copd 1/2/3/4/ just moderate, severe and very severe.I,m severe.I suspect very severe is when one is dead lol.Have to laugh haa bleeding haa.Easy breathy folks!D. :D

27 Replies

  • Hi FarmerD did you try oxygen .. what was it like

    Is pain in the ass this ill business if not ya lungs it ya spine and so on

    Glad ya not lost ya whit :))

    Yer a dont know what numbers mean .. dont even think doctors know

  • Hi Dazer,did,nt try oxygen,had it before when in hospital.I think maybe psychologically it helps but pointless if unnecessary .Need a new body I reckon lol.D. :D

  • Hi famerD cheers thats you and me both :)

    A dont know if when i had full test " where u spit out machine pipe " in order to breath if test was oxygen but befoure valuve shuts of .. it was like trying to breath three a brick

    Think if ya not dead all ready them test try do for ya

    Anyway a said to nurse am not doing it no more a said machine trying to kill me.

    Yer only ression am asking is why is oxygen not sutable for everone

    Could it be coz of what a said .. Any cheers farmerD

  • Think you,re talking about the full lung function test,in the big plastic box.It sure is a killer but suppose it gives them the information they need.Think I,ll put in for a body swap lol.D.

  • Cheers yer thats the one forgot about gold fish bowl :))

    Yer way things are going with tec a think there be able to inprint our Souls for better word on prisoners

    Might need to patiant that idea .. Lol

  • No, very severe is not dead, I am still here, with my oxygen. :)

  • Glad to hear it Toci! :d

  • Where would we be without our oxygen. Guess you could say were lucky to have it, Yes! that's how to put a positive spin on it en' it. :)

    Were alive and get oxygen for free, sounds better and better.


  • Make that 2 not dead ! :D

  • Are you another very severe Puff?What,s your fev?Glad you,re still with us of course.D.

  • Yes, another very severe although I don't seem to be as bad as some. FEV1 3 years ago when fist diagnosed was 24% but now averaging 26%.I only have emphysema. No bronchitis, which is probably why I can still get around reasonably ok.

    I intend to be around for the next 20 odd years ! :)

  • Ah this is what confuses me .If your Fev is 24/26% and you are "very" severe,my Fev is 19% yet I am classed merely severe or am I missing something?How did you manage to improve it?

  • You should be classed as very severe if you have a FEV1 under 30%.

    When I go about my day to day things I tend to push myself a little. Not enough to get breathless but sometimes enough to get puffed out. I am a believer in keeping active and I think this has helped me improve my wellbeing. :)

  • You should be classed as very severe if you have a FEV1 under 30%.

    When I go about my day to day things I tend to push myself a little. Not enough to get breathless but sometimes enough to get puffed out. I am a believer in keeping active and I think this has helped me improve my wellbeing. :)

  • I think TLCO is your Gas conversion. How well you get oxygen into the blood and carbon dioxide out of the blood. Things arn't so bad Farmer D as you still have the power in your lungs to cyber laugh. well it takes a lot of oxygen to get that little finger tapping on your computer key board dun it. :) .

    Tony. Hang in there FD who knows a cure could be just around the corner.

  • Yes that was it conversion.I do like a moan occasionally though but can still laugh.Found out probably won,t get funding for my wet room so have to get into even more debt.Might just rob a bank,get better treatment in jail lol. :D

  • I'd be having a moan too in your circumstances. It seems bizarre that you wouldn't benefit from oxygen when your breathing is so bad. Did they give you a reason ?

  • Argana, oxygen sustains major organs. It does not stop breathlessness. The only reason to prescribe it is if the blood/oxygen saturation level falls below 88.

  • Yes,my sats have only dropped to 87 once or twice while at home.Du ring the assessment they did,nt go below 90.Yet I,m still have great difficulty breathing,I think it may be more of a muscle problem.D.

  • So your other organs aren't suffering from your breathlessness then Farmer D ? I suppose this is good. Regarding the fev scores, I've heard it suggested that the numbers aren't always the most important thing, but how well you can use the capacity you have. My experience is limited - I'm relatively new to the sob situation - but I know that some people are much more active then others who may have higher fev scores. I think it was Tadaw who said here recently that they'd given up on the numbers and just dealt with the condition. Keep pressing for an alternative to the steroids and keep fighting.

  • I do have other health issues due to past,liver failure,bowel cancer and stuff so not sure what affects what anymore,needs a bit of joined up thinking on behalf of the doctors .D.

  • Thank you Toci ! I wasn't aware that 88% was the cutoff point. From reading the postings here I thought it was recommended for those whose levels regularly fell to 94.

  • trouble is in my opinion when the brain seces a shortage of oxy,it put the heart rate up,to compensate,all is well,but like mine it can only take so much and it will start to loose its rhytham ans that ousets the blood flow,in the case of oxygen not helping,i think thats to do with lung capacity,the doctors wont put anybody on oxygen unless its vital,i have this argument all the time even tried a puff of air in a can,that did help but the medics went nutty when i told them i used it,because of the preaure in the can.i have that feeling i want just one puff would help me

  • I was put on oxygen 4lpm as soon as I lay on the bed when I went in for an ablation because my stats were low. I felt better the whole time I was there and went back to my normal self once they discharged me.

    Be wEll

  • I'm very severe and not dead yet. Have portable oxygen for walking round the shops and exercising. My oxygen levels fall sharply on exertion. Not planning to die for a while yet!

  • Glad to hear it Gran,I,d like to stay off oxygen as long as possible but have to get off these steroids and I,n not sure what we,ll try next,see consultant on Tuesday so hope he has some ideas.D.

  • Hi farmer D, Glad that you are still laughing, I think if we didn't we would go mad. I seem to be on a roller coaster , up one min down the next. I'm not on oxygen, my levels are fine, just the rest of me that does not want to catch up. Keep smiling take care nannyb xxx

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