For @Katinka: So I had 2 sheets. He... - British Lung Foun...

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For @Katinka

So I had 2 sheets. He took that one, considering the fact that I was under inhalers and Prednisone when I did it. It was the VR/CPT that alerted him 41.65%

The other thing which was interesting was the reversibility test when you take the 4 puffs of Ventolin and are tested 10mn afterwards, well all my stats were down. That shows the bronchodilators don’t work.

Take care Kate xx

Fran

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Thanks. Not quite sure how to interpret the Residual Volume (VR?). This is what shows air trapping. Mine at RBH was 203% predicted. Quite high. But thank you for letting me see them. I shall have another look on my desktop when I can get a larger image.

Kate xx

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Yes VR..Yours was definitely high. You must be quite short of breath? Were you on steroids and inhalers? Are you actually? Because I cannot make out the real score..and do you find them helpful?

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It's complex, you know what Zebras are like. Obliterative bronchiolitis is a fibrotic condition and so steroids are not really much use. They keep trying them when I have an exacerbation (which is a change and I think it is developing into bronchiectasis) but I don't notice much benefit. And — yes — I am very breathless, all the time. Even at rest. Bit of a bugger. K xx

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Hmmm..difficult..I found Pred really useful but specialists didn’t like what it did to me, so now I have the adrenal glands insufficiency as well and I have changed to Hydrocortisone it is useless for my lungs..

Best thing so far is my essential oils massage mix, it keeps me breathing but it is hard on your clothing 😃 ..so I have stocked up on Charity shops woollies and cheap jeans!

Love,

Fran xx

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You certainly have a lot of numbers there to go at! Very Swiss, at least, that’s what we think of as being Swiss. Meticulous and thorough! K xx

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Well apart from the usual ones I don’t know what they mean. They usually look at FEV1, TCLO and RV/TPC..

Fran xx

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Hi all, I got a note asking me if I wanted to write about useing prednesone so here is my humble opinion. In the right circumstances they are like a miracle. I have PMR, a very painful form of arthritis and was on a tapering dosage for around 15 months. Day 2 of the regimen I felt like a new man. We had to go back up a notch on occasion as the pain came back. Now, for a while things were good except that I needed an artificial hip. That negated using more prednesone as it would hinder healing. The pain came back and there was nothing I could do about it. After the hip, i used it again for a bit and had some relief. Now it’s time for a new shoulder, that being done in 2 weeks. For all the talk about how good or bad it is, it is a steroid. In fact, know that any drug ending in “sone” is a steroid, or so I’ve been told. So beware. On the subject of breathing which is the purpose of this blog, I have not been moving around or excersizing much and that makes my breathing a problem. That leads me to say this: don’t stop moving even if all you can do is make the bed and have tea with friends! Try to enjoy what you have.

Best to all,

Bruce

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