Various Lung Capacity numbers explained?

[Catel]

Hi Guys

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.

Thanks

Cate

[Hidden]

Hi Catel, I don't know how to convert it either but I always ask for my reading as a FEV1 percentage and you can always ask for copies as Stitch suggests.

The walk test is usually for 6 minutes exactly, no matter how many times you stop they then measure how far you have travelled in the time. It can then be used again at a later stage for accurate comparison. I can't see why they would have you walking 10 or 20 minutes, unless they were looking at how this effected your oxygen saturation levels?

[evo1510]

have you been to pulmory reability.my breathing was bad.but since i been going and doing excercises and i cant believe the differance. it has made to me..ask your doctor about it if you not been.its well worth a try...xx

[Catel]

Hi Guys,

I do get a copy when I ask for it, but that usually takes a good month or so to work its way through to my Dr, as you know these things seem to take a huge amount of time.

Thanks so much for the links and calculations, will spend some time digesting the info this afternoon.

As far as Rehab/Pulmonary Physio, as Ive said Ive been sent home from 2 different courses, as soon as I stand up, even in real gentle exercise my rib pain is so unmanageable I simply cant do it. I do do some exercises they gave me and a dvd they also sourced for me, basically Heel raises, Wall presses, Small step ups, shoulder shrugs and hamstring and mini squats up and down onto my sofa.

Ive also now got a treadmill which Im hoping will make things a lot easier exercise wise, I now dont have to go out in mid winter walking in all the cold and wet.

Walk test wise, I did the 6 minute shuttle walk between 2 cones etc about 2-3 years ago, however I went for a Oxygen review/examination, and that merited a long , 24-30 meter walk along a corridor, up and down for around 20 mins, again stopping and using inhaler/oxygen, and then start again, this was so they could test my oxygen levels and if I needed oxygen in both walking and sitting.

For a long message about what I went thru at my specialist yesterday please have a quick glance at my updated message from last night. Can be found at my earlier post:-

Diagnosis, and available treatments in the UK,

blf.healthunlocked.com/blog......

Many thanks for your input and advice guys, its so nice to be able to ask/ talk to people who understand what my wife and I are going through

Regards

Cate

[derrylynne]

If your sats are going to 60-70 in motion that is very severe Sob. Why are you not on oxygen whenever you are on the move as I am. I know your sats recover quickly, sadly for me that is not the case, but by walking around with sats at your rate is doing damage to your cells in your body. Please see your respiratory nurse, or oxygen nurse if you have one, and ask about using oxygen for whenever you are out, or doing jobs in the house. I use oxygen for dressing, bathing, doing jobs in the house, going up the stairs, anytime I am not sitting either at my computer, watching tv or eating my meal.

[Catel]

Hi Derry,

I do have a standalone unit which I actually bought myself as I was having problems getting one through the NHS. As I say I did that 25+ meter walk over 20 mins, then they left me for 5 mins, allowing me to use oxygen and inhaler, then took the reading which came back at 89.

I was told basically that was too high and I didnt need oxygen, so I bought mine. It really really helps, doing 20 mins each day, and 20 mins before I go out somewhere Im going to have to do anything mildly strenuous.

This test was 12 mths ago, and I had the real shuttle about 2-3 years ago (Number 9 sticks in my mind, would that be circuits of the cones 6m apart maybe?, I know I had to stop a few times and use my inhaler , but that was 2-3 yrs ago....and Im getting senile lol), which was when I was first diagnosed with 'Significant Emphysema'

Speaking with area specialist yesterday he said 'I wont ask you to stop using your own unit, I can understand how it helps but the rules are rules and my score was a minute number above I think had it read 86 or lower I 'qualified'.

Now ,had they taken my reading the instant I stopped, we all saw it saying 69%, but that was just on the finger unit as I finished. I really was close to crying why they wouldnt let me have NHS paid Oxygen, but their hands were tied.

I did ask Dr yesterday and he did say that maybe portable oxygen when I was mobile would be in order, but he wrote so much stuff I think that will drop off any letter or reports.

I think now I wait for the London guys to test me all over and see what happens. Maybe they will ok it from there, big specialist guy Im being referred to.

Thanks for your reply

[Jemma]

Catel

I'm not too sure on this one but when I was first tested for 02 about 9 years ago the % FEV for the requirement of 02 was a lesser figure than it is today and I don't think 89 would have qualified Have a feeling it was 88. I think it changed a couple of years ago to a higher FEV1 so maybe you will be prescribed 02 now.

Perhaps any member reading this can clarify this?

Did you have either an Arterial Blood Gas Test or perhaps they took some blood from your ear lobe? I think this is another part of the requirement for 02 test.

[Catel]

Hi Gemma,

Yes I had a blood gas thingy done, from an area just above the pulse spot on my upturned wrist, sort of under the thumb bulge but above the pulse area on the right of upturned wrist, was very very painful.

And yes, I was told 89 was 1 % too high, exactly what you say above. Had they taken the reading 2 mins earlier I would have been 80 ish.

Ive had some more clarity on numbers, the REV is 1 to 0.8Litre (Not too sure, lot of confusion here but one of them was certainly 600ml, which means the only one that could be over 0.6 would be the Full FEV @around 1 litre, Peak Flow is around 300, again apparently lowish. Using the calculation sites recommend my % is under 20 which isnt very good is it. However, I do feel that Im no where near as ill as some folk I meet, so feel I can push the envelope enough to give us 10 good years, will sure be getting fitter and trying to lower my BFI along with that

Thanks again

Cate

[timber]

Please do not worry about the 5 year thing ,I was told that 12 years ago.

Best wishes

Woody