Tuesday, February 9, 2010

The New Outpatients

First visit to the all new outpatients yesterday. This was for a Tobi trial with the Ineb. They have put the outpatients in the old Pearce Ward, so the outpatient rooms are the old in patient rooms, which is a bit odd, kind of brings the memories flooding back. The last time I was in there there was a communal kitchen / social room where you could hang out, watch videos and fix yourself breakfast (this was about 10 years ago before the cross-infection rules kicked in for everybody, not just Cepecia patients)

The Tobi trial went OK, I got a new lilac coloured filter with a bigger container for doing the Tobi nebs. Nice. Unfortunately, the Tobi takes about 4 minutes to dispense, and you have to do 2 lots of it, which is a bit rubbish because I can neb Colymycin and Ventolin in 50 seconds flat. DNase takes about 2 minutes. Apparently it's because the Tobi is a lot thicker.

The blows before the Tobi test were a disappointing FEV1 2.7 FVC 3.6. The blows are in that area where they're not that bad but not that good; so it leaves me in a bit of a no man's land. If they were down a lot (say 2.3-2.4) I would go straight onto IVs, and if they were up high (3.0-3.1) then I would be happy as a butchers dog. Meh. When I do the spirometry test I get a high pitched wheeze so I think the 10% loss of FEV1 over the last few months may be down to that, because my sputum seems to be completely under control with nebbed Colymycin and now Tobi. In fact the last time I had IVs I didn't *really* need them I just had them to see if they would improve my FEV1, which they didn't have a massive effect on.

Anyway, I asked the physio about trialing Hypertonic Saline, as I want to see if this can reach the parts that other nebulised solutions can't ;-) Roll on next month...

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