Im getting very confused by various numbers and predictions and so on. Im trying to make some sense of various details I have compared to what numbers you need for something like the BODE test, which needs FEV %, Shuttle 6 min walk
Im trying to find the fev1 predicted % score, but all my specialist just told me my FEV is 600ml which he stated was very low indeed. Quite how this should be calculated as a % I have no idea, hence the post, which just grows as I think of other pertinent data I have. How do I work out a % number from 600ml? I asked for several numbers but the only ones he was able to offer was as I say 600ml,
Also on shuttle walk, I walked for 20 minutes, stopping and using oxygen every minute or so. My shuttle walk involved me walking a long distance along a corridor, a lot longer than 10 mtrs, and back, for 20 minutes.
However, I see most calculations saying its a 10 meter distance for 6 minute. How can I equate these to a 6 minute walk distance? Seems a totally different type of shuttle walk for different specialists/testing hospitals? I did a long time ago have a 10 meter 6 min test, I was able to complete 8 circuits, which I think was very good, but as I say, this was several years ago, Im a lot worse now.
I didnt do very well, having to stop every circuit for a few minutes. My blood oxygen was very strange, in that I recover quite quickly from serious breathlessness. I get totally out of breath even going to the loo, my Blood Oxygen will go below 60-70 in motion, but within a couple of minutes of stopping my BOLevel is back up to 90ish. I do have oxygen but only used before going out or when feeling out of breath at home.
Seems so many different terms and numbers its got me totally confused when trying to explain to myself what sort of prognosis I have and what I can do to improve this.
I know Im quite seriously low on things Im capable of, and been told my disease has gone too far for various LRS or Valve treatments to be of any use but Im trying to show myself if its a bad as Dr make me feel at appointment yesterday, maybe somethings wrong, or Ive used wrong numbers, or specialist has missed something,
Sorry for the usual rambling post but any advice , literally anything, will be of help.
As usual, thank you for listening guys, I need someoone to talk who isnt my wife, who after being told by Dr yesterday I was looking at 5 years unless a treatment could be found, she broke down and I now must be very careful what I tell her, so Im trying to find some light at end of tunnel to pick us both up.