Thursday, April 22, 2010

IV League

FEV1 2.8 FVC 3.8 sputum from last month showed Staph and Pseudo. Has the Staph come back? I've not been keeping up with the Flucloxacillin, maybe I should start taking it at night again. Otherwise the visit at the end of the IVs was good enough, even if Doctor R did annoy me a bit with his questions. I also brought up the VX-770 trial, and he said I was giving him news. Which was a bit disappointing, shouldn't he be telling his patients the news? Anyway, hopefully we'll hear how the trial goes soon.

Friday, April 16, 2010

Friday Tune (Best of the last decade part 3)

Sod it, it's Friday, it's just a nice tune :-)

Well I'm into my second week of IVs, lungs seem **mostly** clear, so I decided to celebrate it with a half hour run. I felt good on the run and even had some energy left at the end to do a sprint finish, which is unusual for me.

But, (big but) about halfway through the run I developed a rattling wheeze. I sounded like Darth Vader. It was a wheeze that I could feel more on the inhale breath than the exhale. I've had it for the last few days more so in the afternoon / evening. And no amount of huffing/coughing would shift it. I''m wondering if this is asthma related, (possibly ABPA, I've had it in the past) does asthma effect you more on the inhale or the exhale? Anyway, I rang the hospital and they're gonna do an X-Ray next week when I go back and also do Aspegillus blood test so we'll see what happens...

Tuesday, April 13, 2010


I haven't swore on this blog much, coz it's a limited form of communication, isn't it? Yesterday I felt like it but it would have just turned out like "the fucking fuckers fucked, it can get fucked for fucks sake" or something. And all I really have is questions with no answers. And I feel like I've been hit by a stealth CF infection with added wheeze factor. Last summer I was 10 stone 10, now I've dropped down to 9 stone 12 which has completely mystified me; I have no idea how this happened. Can a stealth pseudomonas infection really rob me of so many calories? The doctor reckons it could be but I remain baffled...On the plus side my stomach is really flat...;-)

The other day at hossy my blows were down (FEV1 2.4, FVC 3.8) my weight was down 9 Stone 12 and I was pissed off. Since the start of this year I've been doing everthing right, started Tobi nebs, done loads of exercise (3 hour bike rides through the hills, training for the Manchester 10K) and yet despite all these efforts the LF and Weight is at it's lowest since 2005. I wonder what the hell CF wants from me, I've played by the rules and I get my arse kicked ;-)

Anyway, I'm back on IVs (Cefttazadine and Tobramycin) and Scandishakes. The IVs give me the runs so I'm having Immodium to slow my guts down, which impacts on my appetite, combine this with 500 calorie scandishakes poured over my cereal and my guts are churning and gurgling like Johnny Vegas's private sess pit after he's had a night on the curry and beer. Meh!

Friday, April 9, 2010