Wednesday, June 13, 2012

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;-)

The Politics of Kalydeco

Don't you just love politics? The first cure for cystic fibrosis, the first drug that targets the underlying cause of CF and I have no idea when and if it will be available in the UK. I am hopeful, but hope is all I have at the moment. The company that owns the drug (Vertex) wants to make as much profit as possible, the NHS wants to save money. The total CF budget for the UK is 100 Million. If Vertex charges what it does in America then it will cost 50 million to treat 5% of the people with CF who have the G551D gene and can benefit from Kalydeco. There is posturing on both sides and the months tick by. Meanwhile people on the transplant list are one bad cold away from intensive care. Please sign this if you can, if only to raise the profile of Kalydeco / vx770 :

We're currently trying to gather together as many people as possible who have the G551D CF gene. Please leave a message if you know anyone in the UK who has G551D.

I have been on holiday to Kefalonia for a week and have not posted about it. For shame. It was ridiculously lovely and probably my favourite holiday for a long time. I think staying in a villa suits me much more than the battery farm approach of all-inclusive resorts I have been to with the family recently which were fine enough but looking back I was perhaps missing something I only get when we can do what we want when we want. Here's some photos...