down low and up high

hello :)

just gonna get straight back into it and let you all know that the beginning is going to sound like abit of a rant and then the end will be some good news.. i promise. i just need to vent.

okay so i had an admission around 4 week ago and things were going okay actually, i had my peg tube changed to a button now which i feel alot more comfortable with. it wasn't simple getting it in but we got there in the end.. let's just say my gag reflex is disgraceful and a camera down the throat simply does not go down well with, whether i be sedated or not. i couldn't even manage to pass a NG feeding tube :(

anyhoo.. like i said, got there in the end.

so after three weeks of IV's i was discharged with my lung functions up, peg-to-button procedure successful and weight up as well as my infection level nice and low. i was still a little productive but numbers were up so i just went home.

the first week wasn't too bad and i was doing everything exactly as planned, taking all meds, all nebs, all feeds, doing physio etc and then i had my flu jab....

well things changed, be it coincidence or be it an underlying viral?
i started becoming more productive, i was up coughing during the night, i was achey and felt freezing cold. i left it over the weekend to make sure it wasn't just a side effect of the flu jab which usually takes a couple of days to go through my system but by monday morning i was a little worse so i called my cf nurses. they sent me a two week course of orals and i was placed on 500mg of azithromycin and 750mg of rifampcin.. just had to wait for my GP and chemist now.

as the week went on, i was no better and my appetite was slipping, it was taking close to all morning just to clear myself and feel close to actually wanting to start my day.

four days later, chelsey came round my house and i was still upstairs doing physio this particular morning, as i was feeling crap and unable to talk through coughing and catching my breath, she rang my GP surgery. the secretary insisted the prescription hadnt even been faxed, a little while later she suddenly recalled seeing it and sending it off to the pharmacy, we were advised to give them a call.

so chels did.

on speaking to a women at the chemist, they hadnt recieved my prescription.. so we called my GP surgery again! the rather 'snotty' and unprofessional secretary informed us that it had been sent to the chemist to which chels said she'd just spoken to someone and they hadnt recieved a thing for me; the secretary then changed the story and informed us that it was in a box infront of her awaiting to picked up by someone from the pharmacy along with others.

finally we got somewhere, after my mum calling all week and chels having to ring round oldham to find this prescription that apparently at the start of the morning hadnt even been faxed over from the CF centre, to suddenly being at the chemist and now being in a box on the desk at the GP surgery.

me and chels went down there ourselves and took it to the chemist to try and get me started on some orals.

that weekend i stepped on the scales and after the high of finally reaching my GOAL weight after nearly 2 years.. i was completly disheartned and dissapointed to see i'd lost weight and was back down to below my goal of over 9 stone. i felt like all my hard work was for nothing, had been thrown back in my face as i was catapulted back to square one again. i was doing everything i was supposed to and just 1 week after having 3 weeks worth of IV's i was right back where i started.

totally fed up was an understatement.

i suppose it can feel extremly tedious the ups and downs of CF. i've always known that but sometimes it's a little more prominent than others. this time round i feel like i have took 2 steps forward and 5 steps back. i'm hard on myself, i know i am but this is all i have my life revolving round at the moment, it takes over EVERYTHING.

i needed to snap myself out of the slump so i went to knowsley safari park with my bestest friend chelsey .we had a good chat and we got talking about transplants. we decided to make a little plan up of what i'd do post transplant (note: we were talking about if i need one, if i HOPEFULLY get one and also if i HOPEFULLY have a successful one)

i always thought i'd go to college and uni and get a great job and then things took a turn for the worse and as you all know i had to drop college and stay at home as it was getting too much, when me and chels were talking, i realised that if i had the very lucky chance to have a second go at things post transplant, i'd get a part-time job in a cute little sweetie shop and the rest of the time i would LIVE and LOVE every second of the life i would be living :)

it sounds absolutly perfect.

that following wednesday was a VERY important day, it was the day of my driving test and i am very pleased to inform you all tha.....

so here is where i stand right now, i have passed my practical driving test, i am better than i was when i started orals but i am back in costa del wythenshawe now on IV's so hopefully, i can try and fix myself a little. whilst i am being fixed, my motability car will be being made, wanna know what it is?...


just like i have always wanted :D

its all very exciting.

well this is just a little update for you all while i did my physio. it's bedtime now for me though.

goodnight... thanks for having a read,

Take care, Sophie xoxo
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1 comment:

  1. Oh bugger, sorry to hear that. It is *so* frustrating when the GPs and pharmacies drop the ball like that. It's even worse when they won't admit it's their fault. Hope Costa del Wythy sort you out, the Mini sounds very cool x