Outpatients through the looking glass

Started my IVs today at outpatients as I promised myself last month. Unfortunately my lungs haven't improved enough (FEV1 2.45 / FVC 3.4) despite the lovely week in Kefalonia followed by a shit week in rain filled Manchester (actually thinking about it the two things probably cancelled each other out). Hopefully I can regain some of this LF with the IVs but I don't know. I feel like I haven't hit the heights in the house of lung in a long time now and like Slade I don't know why. Anymore.

I've looked back at some of my old posts I found this one back in late 2008 and I had an FEV1 of 3.1. Who was I then? I had an annoyingly good FEV1 despite not doing any real exercise. Since then I've taken up running, mountain biking, Steve Jobs has taken over the world, died, and Europe is doomed on a weekly basis. And despite all that time and effort into getting physically fitter I have lost 20% of my lung power and I have no idea why. My last roll of the dice is to join a gym and try and build some muscle; if that doesn't work then Vertex and the PCTs had better pull their finger out with Kalydeco because I'm fresh out of ideas on how to beat this thing called CF. The new pharmacist is really hot though ;-)

2008: Smug twat with good lung function;-)

Tobi, Tobi, Tobi, Tobi!

Went to the clinic the other day for my nebulised Tobi trial with the physiotherapist. The trial is to take nebulised tobramycin for a month and see how things go, and hopefully see some LF improvement over the next month as my blows have been a bit rubbish recently. We did the test and she also rejigged my iNeb with her laptop from tidal flow to TIM (Target inhalation mode) this is better because it quarters the time needed to do the inhalation, and it turns out I will need this extra time with all the extra stuff I'll be inhaling next month. She asked me about my iNeb compliance before she brought up a flow chart telling her exactly how compliant I had been with my nebs over the last 12 months! It turns out my compliance was only 70%, I was well embarrassed, I felt like a naughty schoolboy!

I had heard that Tobi was inhaled once a day, but for the monthly trial I will be nebbing twice daily with an old compressor neb (like I used back in the 80s! Doh!) You take it twice a day and also you need to nebulise Ventolin before it to stop the possible bronchiectasis. that'll be fine in the evening when the kids are in bed, but I will struggle to fit that into my morning schedule, which consists of getting showered, doing a bit of physio (in the shower), getting breakfast, getting Oscar and Abby dressed and fed, and dropping either Oscar or Abby off at nursery / school before work. I think I'm going to have to use the iNeb for Dnase in the car on the way to work, which I don't really like doing as it's not safe and I could get pulled over. The physio also said I should neb Tobi in a ventilated room away from the kids. Hum. Looks like I'm getting up even earlier in the morning...

Anyway enough moaning! I actually felt quite loose in the chest after the trial tobi neb so hopefully I will see some real benefit when the month is over.