They say I need ambulatory O2, but I'm OK at rest. The thing is I had the last 6 x 5mg prednisolone of a course that morning so I wasn't too bad and didn't find it as greulling as it could have been. I've been reminded since that the steroid dose should be tapered off gradually and yesterday and today I've been extra short of breath. Silly me. I could ring the GP tomorrow and see what he says. The Oxygen will be delivered next week sometime.
Might they repeat the test without the prednisolone I wonder? I did tell them I'd had it and I think they should have picked up on it.
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robevanz
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Hi rob - i don't think you have anything to worry about re the pred - they may help your breathing but they wouldn't affect your oxygen levels, so any pulse ox reading or blood gas test you had should still stand. I don't know how ling you were taking the pred for but if it was just 5 - 10 days there is no need for tapering. Congrats on getting your ambulatory 02 Parvati
Hello there and welcome! I'm quite new to this site also and have received a lot of encouragement.
Your introduction here may be missed so I wouls advise you post it as a Blog, choose 'write a blog post' in the grey band above. More people will see that then.
I have ambulatory, to qualify you need to desaturate during exercise and show some improvement with oxygen. Some people use oxygen only at night, usually after a sleep study shows they desaturate for >30% of the time.
If at doctors or clinic your Sats are <x% they will refer you for an assessment, basically arterial blood gases - if your blood oxygen is below x reading then they call you back to recheck 3 weeks later and then prescribe LTOT.
If you search for NICE guidelines on oxygen prescription - it explains it all.
I spoke to a woman at the hospital and she also explained that the prednisolone would not affect the O2 level so as usual I was worrying about nothing. As you were!
As i mentioned above, Pred will have no effect on your 02 levels whatsoever. While they may lessen your SOB and so make your 6MW easier, SOB does not cause or correlate directly with 02 levels. So in Rob's case, where the walk was to test for 02, the fact that he was on Pred would be neither here or there. They were not looking to test his fitness but to measure his 02 level.
If someone was taking a 6MW purely to assess the distance they could walk in order to assess fitness, or in order to repeat it later when looking for an improvement, then the Pred would be taken into account as being a factor in your achieving that particular walk score. It will then be noted on your next 6MWT so that if that one is done without Pred it can be factored into any estimated differences in performance between the two scores, giving a fairer picture of the overall results. P.
Well, it'll all come out in the wash as the saying goes! All this seems very complicated to me but I'm new to it.
Horribly SOB today just walking from one room to another requires a blue inhaler blast and the correct breathing but nonetheless I admit I am panicing because the SOB is overwhelming, and accompanied by feeling hot & faint.
Pestered my GP on the phone who said to wait for the O2 and see how I am then. He was reluctant to prescribe more prednisolone or change inhalers.
SO >"The gas man cometh" Soon, I hope. The order didn't go in till Friday afternoon though.
I'll do my best to remain as at rest as poss till then but I get bored.
Me too!! I started taking something I bought a Life Extension called Stress Relief which contains Lemon Balm and an amino call Theanine and it really seems to help reduce my stress.
Latest ETA is tomorrow. I'm feeling rather miffed at the dismissive attitude of someone on the phone from the hospital who when I told them my sats are 72% at rest and I can't move for SOB said to call my GP (who thinks I have an inaccurate oximeter anyway) or ring 999. I am concerned but don't think I've been a pain in the bum with my worries. Most unhelpful.
Anyway, it'll be on the Wednesday morning that the gasman comes to call. Must dig that song out!
Oh Rob, what a carry on, waiting around isn't it? If it doesn't arrive tomorrow you wanna start complaining big time. Your health is not to be messed around with..............
Hey Rob, hope you are feeling better, the steroid thing I've had a few bad scenarios with it when finishing the course, why don't they say drop of them slowly .....
interested in the breathing test though, I have Alpha 1 & its a mare currently trying to handle it & working in what i do!
how do you get an assessment of exercise/
all news on this blog is positive to someone ,so thanks to you this time .
have you received your O2 yet, Im on the list for-the test later this month hopefully
Just wanted to ask a few questions really, i recently lost my job due to getting so many infections ,do you work? Im at that crossroads of what do i do & from your blogs you say it how it is which is good for me to understand.
Hello Al, I've been awake all night too! Feeling a bit faded now at 6am so hoping to sleep in bits and pieces during the heat of the coming day, very muggy down south here.
No, I haven't worked for over 10 years now due to other health issues I have. I did and still do mend and build computers, having taught myself during that time. So my situation is different. My children are grown up and independent so I don't have that worry. I can only say we have to cope with our illnesses as best we can now we are slowed up by our breathing. One day at a time.
Good that you are having the walking test this month. They saw my need of oxygen at that one I speak of in the blog but after the pneumonia I was tested again and the amount was put up, I find it easier to use now, got used to it. The test isn't painful, they measure your blood oxygen with one of those finger devices and get you to walk a short way without and then with oxygen. They will probably measure your blood gases more accurately by a blood test from the earlobe. That gives them the info they need to decide how much oxygen you need and arrange for it to be delivered to you. It really is such a relief to be able to do stuff without gasping for breath!
I hope this has been helpful and your test helps you also.
Are you getting the benefits you are entitled to? Money worries won't help your condition and you should get advice about your entitlements
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Must dig that song out!
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