Friday, 4 November 2011

IV's Finished, Dnase Started, Lung Function Up! Woo hoo!!

Well i've been home for a week now for out of hospital last Friday, a week last Tuesday after my frustrations i was given an extra week of Iv's Ceft and Meropenim and the DNase was actually started!! The IV's have dried my little lungs up which is good, i don't constantly feel like i'm choking on sputum! The DNase i can feel is working because the sputum i'm now coughing up is a lot thinner!! I'm trying to drink my water, which is easier said than done to a Tea lover! But i am trying, I went back to work on Wednesday & Thursday so instead of my normal bottle of Coke i keep in staff room i took water!! So that's a start and i'm trying to drink water in the evening! My mouth is really dry because of the Meropenim making the Thrush in my mouth really sore.  But with the bottles of Nystatin as my best friend hopefully that will get better fast now the drugs have finished.  My lung function on Tuesday was for me a very exciting 42% the best it had been all year so i'm pretty happy with that just hope i can keep it up, i really felt the difference after 2 or 3 days of the Meropenim, fingers crossed this feeling lasts, i'd really like not to have any more ivs this year! I have so much going on, i'd just like to enjoy my life for a little while!!

I just struggle with this whole idea of Dnase needing to be had 1hr before you have other nebs and physio, i'm actually feeling the benefits of the Dnase around 8pm at night!! Other than this silly tickly cough it give ya! But Emma told me to take Piriton to help with that and it does actually do the trick!! My mornings when i go to work i was struggling enough to do my nebs and acapella, now with the extra hour before hand it's a routine of dragging my ass out of bed and downstairs for half 9 at latest in order to fit it all in.  I know some of you would be like half 9 wow what's she complaining about, that's a well good lie in, but i don't function without a good 9-10 hours sleep and when your awake most nights because of feeds or coughing it's hardly a restful nights sleep most the time.

For some reason my hospital won't give me an E-flow for my Dnase until i prove my compliance with the Dnase and also because i will only be using it for the Dnase because I prefer my Salbutamol and Hypetonic Saline 6% through my ultra sonic neb they said they couldn't justify the cost, against another patient who would use the nebuliser more!  My arguement to this one was well if u don't let me try an E-flow then how will i know if i prefer to have my other nebs through it too!! N also my friends Emma and Aaron both said that they were given the E-flow initially for their Dnase and then they started using other nebs through it afterwards!! So why not me!! Yes i'm not the best with nebs in the past, i hate the buggars to be honest, but now i've got to the point in my life where i can't just choose to do them when i'm not well, i have to do them on a daily basis to function.

I just wish that these nurses and physio's could live a week in our lives, a day wouldn't be enough! Then they'd realise how hard it is to fit all this in and find a balance to have a normal life too!! It's alright in morning when your biggest worry is what to have for breakfast!! It's so frustrating that they work with CF's every single day and still just don't get it!!

On plus side on 23rd Novemeber i'm going to Manchester, Wythenshawe Hospital to see Professor Webb for a second opinion on my care and medication!! I'm have 12 iv courses since Jan 2010 and i don't think they all been necessary, some i've had before holidays but they just don't seem to do much! It works out that every other month i've been on iv's and most of them have been for longer than the 14 days, some 3/4 weeks and once even 6weeks.  I know there are other CF's so much worse of with me but we all have to fight for ourselves at the end of the day and i'm hoping they can just look at things and try and give some alternatives to help me feel better and stay off IV's for longer! Fingers Crossed!! xx

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