|This is what I assume the Pseudo in my lungs|
It's very expensive, around £20,000 a year! So he and Judith sat down with me and said was I prepared to have it because it's not something you can just decide to do when you fancy it, you have to be committed to taking it because it's so expensive, you don't want to waste it! Of course I said yes. Only 5 people in the unit are allowed to have it because of the cost so I'm quite lucky :)
Unfortunately they have to order it in, so next week I'll have to pop down and have a trial dose with the physio and Judith to make sure it's okay with me & if so I can begin! It's a month on, a month off so that's quite handy too. Only downside is it's 3 times a day! So that's going to be hard to fit in with work and everything but I'll do it!
I mentioned to Dr Ho about Kalydeco & he said it's so annoying having something that could so improve quality of life but not being able to have it! He said he wishes he could give me the tablet now! But the good thing with Frimley is the MINUTE it becomes available I will receive it :) So please don't forget to keep mentioning it to people, the more people talk about it the more people will know about it and the quicker can create a fuss about it all. At the moment we are waiting for them to make a decision but we don't think it'll be before Christmas..let's hope and pray the decision is a yes!
Anyway, I'm knackered, nearly over this chesty cough now I think but no energy left at all after hospital! So I'm off to relax :) Have a lovely weekend! xx