hi i'm sophie and i have CF

hello there :)

i haven't felt myself over the past couple of days.. just abit offish and not so happy, smiles, rainbows and sunshine. me being female isn't contributing to this rapid change of mood at this particular time of the month, may i add, but i just can't snap myself out of it.
it has gotten me thinking about so many things though. things i'd like to just get all out of my head and off my chest.. if that's okay?

i've decided i am going to chat to my doctors about transplant and the whole procedure. i just want to know the ins & outs fully so i don't feel like such a rabbit caught in headlights when the topic is eventually at the forefront of conversation with regards to my health.

for me personally, i don't feel like i am ready to have the ball rolling for assessment etc. i don't know whether that's one of these three things; i don't know if thats me being in denial or i don't know if that's me coping with how things are now and not really knowing any different than how life feels right now or i don't know if i am just right and it isn't my time to be going down that road yet.

the dreaded 'T' word has been mentioned before when i was transferred to the adults from paediatrics, however, after improving slightly.. it's been placed on the back burner as my wishes were to see how things go.
time has gone by and every so often my team leave little hints for me to think about it. they never really say it as such but i pick up on things they say every so often and maybe it's just me but i get the impression they're feeling it's not gonna be too far away this side street i need to head down for transplant assessment. i have always been told by each member of the team that they would never pressure me and that they're always there for if i need them. i feel like this is there way of telling me, i need to talk to them about it?
Obviously, i could seriously be barking up the wrong tree but i guess it's worth asking about?
my lung functions drift from high 20's-to mid 30's (percentage wise) and the highest they've been for the past year or two was (one random miracle) of 38%! that was a while ago now.. i'm slowly putting weight on, but even that is like a sea-saw depending on my health. going off quality of life, i know it could be a hell of a lot worse but i am talking about me so in comparison to how things were around two years ago, i start to notice just how big a decline things have took.
i no longer manage college so i am at home every day with my dog roxie, i come in hospital for IV's every 5-7 week for a 2-3 week course of strong antibiotics, i sleep on 8 litres of 28% oxygen every night, i use the NIV for airway clearance to keep my Co2 gas level from rising and when it does i then have to sleep on the NIV (a non-invasive ventilation system), i manage 5-10 minutes (depending on how my chest feels) on the exercise bike at level 1 using 8 litres of 28% oxygen, i have 2000 calories poured into me via a mic-key button gastronomy tube in my stomach over night to keep my weight stable, i often get viral's & infections that seem to batter my tired little airbags these days, i use a wheelchair to get round big places such as the trafford centre and sometimes if i'm not feeling so good i may take a portable oxygen cylinder out with me just incase i happen to need them for relief.
to some who may have things miles worse than i do, i am in no way complaining and 'bragging' about how 'sucky my poor life' is.
i am just confused as to when i am supposed to think the time is right for transplant?
if i am the one who has to approach my team about the whole thing?
do i wait for them to come to me?
do i feel ready to go through with it all yet if it's what they think is best?
so many questions i have thought about.. so they only way i'm going to know is to ask right?
i could be told i am in no position to be assessed as i'm too healthy yet.. i admit things are doing okay but i'm not going to lie. the tediousness of my life is starting to drag me to the point of tearing my hair out.

i have no motivation & inspiration to be aspiring to.. i am simply getting poorly, to get better, to get poorly, to get better, to get poorly, to get better and that's what my whole life and everyone around me lives revolve around and it sucks knowing i'm the reason there life has to be put on hold every so often because i'm back in wythenshawe hospital. it sucks being a little bitter about friends who have the energy, time and freedom to go out and have a ball and LIVE.
is it possible to be engulfed in a disease? to be totally controlled by it?
i don't want to come across like i'm feeling sorry for myself because my life is awesome... the people in my life are my reason for smiling and being happy and positive on life. i couldn't want or need anything more than i've got but a little more better health would be welcomed nicely.

i know this is my rant over for a really long time but i've felt really gutted this past two month with my health and just needed to express this in the way i know best. i'm crap at talking because i don't get my point across in the right way and i can't really explain what i mean and feel, so decided to blog it instead. might not even post this but then again.. this is what you guys subscribe and want to learn and hear and try to understand i guess?

just want to tell my mama, papa, beth, chels and arran that i love you all with everything i have to offer and i might not ever say it out loud often enough but THANKYOU for everything you all do individually or all together. THANKYOU for putting your own lives on hold alongside me when i happen to go on my holidays to costa del wythenshawe or just when i'm not feeling so good. i'm sorry i am such a pain in your behinds at times and i don't ever take you's for granted, i know how lucky i am to have each of you. mama, papa & beth you don't have a choice but to put up with me and care for me and love me <3
Arran & chels you guys just decided one day that i could count on you and rely on you to stick by me and look after me and love me! :) <3

soppy stuff over, i feel better already and know this slump is gonna be hitting the road as well as this viral infection :')

take care guys.. thanks for reading.
soph xoxo

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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.....
I PASSED........... WOOOHOOOO.

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?...

A BLACK MINI COOPER

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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