Friday, 24 February 2012

2 n half weeks on how am i feeling!

I've been blogging alot since i've been here, i think talking about my CF is a great distration and when your in here you have way too much time to think and writing my blog takes up time and gets things off my chest, it's like when i'm sitting here in my room on my own, that in someway writing my blog i'm actually talking to someone.

So i've had two and a half weeks of iv's and my lung function a few days hit 41!! It was 27% when i came in so i'm really happy with that.  It's been good staying in for the two n a bit weeks of iv's here for my first admission as it means the physios have been able to see things for themselves how much i cough up with sputum when i get poorly then how it trails off and at the end of ivs nothing comes up! Was just a small little pea size blob yesterday and today so far nothing.  But then this is process of my cycle and a week and half two weeks after iv's finish the sputum comes flooding back again. 

So hopefully that's something that the Meropenim nebs will help with, they've also today put me on Azithramycin every day, i used to have this years ago but at stoke they want you to take it three days a week, Mon, Wed, Fri and i just couldnt remember it.  So least every day i'll add it too my million of normal night time pills and remember it! I got given this pill box to help me

Physio wise she's starting to realise that my hypertonic and acapella don't do as much for me when I'm well but you can still hear the sputum and feel it's down there, even the bird stopped working.  So i'm not using that now! I've just been doing exercise in the gym still and i'm still improving each time! Monday i even went to the Trafford Centre with my brother and was able to walk round for hour with our sitting or feeling too tired, although when i'm shopping and i'm well i can normally power thru a good shopping trip.

I've also this week tried a good old fashioned pep mask, which was like going back to the dark ages don't think used one for about 15 years, but it seemed to actually help! I used it for the 5 breaths and then used my acapella for the two long breaths out and i actually moved sputum.  So hopefully using the two together will actually help to move sputum when i'm all clogged up but my chest is tights!

I've done an exercise tolerance test, had to peddle on the bike for as long as physically could, it was hooked up to a computer and it got tougher, i only lasted 5 mins before my legs gave in, but i really did push myself.  In doing it though my lung function dropped afterwards, which they think is because the exercise moves sputum so they want me to consider getting a bike or something for home.  I'm going to canccel my gym memebership now, i've not been in 4 months and i'm never likely to go to be honest.  Now having used the treadmill here i know i have such a low tolerance and i'd be coughing and i couldn't stand next to fitness freaks doing it.  So i need to find away to get exercise in a home. The last exercise bike i had i hung my clothes from it and used it about twice!!  Not sure where i'd put one in the house though! So they lending me some peddals that i can use sitting on a chair to try!! :)

I'm so used to my consultant seeing me every few days and been at a hospital so pressured on sending people home that every time at Estimated Discharge Date (EDD), been told it's not a hotel and I can't stay there forever, here they don't even mention home, in fact they almost want you to feel like its a hotel and your happy here that they don't want you to go home till your really ready.  I hoped i'd be going on Wed but i'm definately going home today (friday).  I'm glad now i think i'm ready to go home now I actually feel really good x 

It's gonna take some time to get into my new routine of all the things i need to do, but hopefully i can make it all work for me and i can actually stay well for a while, cuz i didn't managed to get signed off on my mixing my home ivs, so i will have to come back in to hotel Wythenshawe next time im ill for a few days! But do you know what, that actually doesn't scare me for a change! I feel safe and well looked after here and i'm actually gonna miss my bacon and tomato sandwich been delivered to my room every day at 1pm.  I'm going home today after i've eaten it, so i'd best get packing!!

Thanks for reading my blogs on my big decision n move, i'll try not to leave it to long to blog again, but it's back to work next week and i won't have all this time on my hands like usual!

Speak soon! xxx

Oh n i forgot to tell you, whilst i was here i rang the local paper and got my story in about moving.  So check out the article x Just to mention though we haven't failed in our mission to get a CF Unit @ UHNS we are still fighting for it and i've just been for a meeting a Westminister with CF Trust Chairman and our local MP Rob Flello so it's still a very slow and frustrating work in progress.

Tell you more when i know more!! But i have my official meeting on 2nd March at Stoke about the reasons i transfered my care so that should be interesting!

Got to pack now!! Especially if i want to get my nail appointment!! lol

Bye xxx

No comments:

Post a Comment