Friday, 16 November 2012

Hospital time again!

After feeling horrendous all week & having lungs that felt like glue I thought 'oh here we go, I'll go to hospital, lung function will be awful and I'll be back on IVs'! So I went to hospital.. and for some reason my lung function had actually gone UP! What on earth?! So my lungs feel like shit and my lung function increases..that makes sense. Haha, oh well I'm not complaining! 
This is what I assume the Pseudo in my lungs
looks like!
Dr Ho came to see me, I explained that the horrible chest pains went & he said he thinks it was a plug that was causing it. He then said he thinks the reason I've felt so ill and my cough has been sounding quite nasty is because of the pseudomonas. Basically, Pseudo is a really nasty bug that non CF-ers have in their lungs most of the just doesn't affect you! Whereas with us CF-ers, it can affect is quite badly. Unfortunately the Pseudo loves my lungs a little too much and I've been colonised by it (a lot of CF people suffer with this) - it basically means that I will never get rid of it, it'll always be in my lungs..I've just got to try and prevent flare ups! So Dr Ho thinks the little Pseudo have been flaring up again..seeing as the trial dose of Tobi in the neb didn't work the only other options of treating Pseudo and trying to keep it at bay are either IVs or nebulised Aztreonum. Seeing as my lung function and SATs were okay, we thought we'd give the nebuliser a go first :) 
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

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