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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  1. Its so good to read about how you truly feel babe and it sounds like it is time for the long chat with your team about the transplant option lovin ya millions.xxxx

  2. And always remeber you are loved because of the fantastic person you are not because of the illness you have to struggle with ever hour of the day... stay strong my beautifull butterfly and fingers crossed those winds will be flying high .mwahhhh.xxx

  3. Hey lovely!!

    Ok you sound like you are in a very similar position to me except when I wasn't on such high o2.

    Transplant was mentioned to me well over a year before I actually decided to go ahead with it. A meeting was called with the whole team, myself and my parents and they all told me that they thought I was coming to the point if I didn't improve where transplant would be a big option for me. At that time I was scared and I didn't feel like I was sick enough!! I carried on with life when I got to the point I think you are at now. I got fed up of being sick, of CF taking over my life, of not being able to do the things I should have been doing in my 20's!! I spoke to my best friend who frankly said to me Victoria do you want to live or do you want to die? I obviously wanted to live so I spoke to my team about what they thought and although I still felt too well for transplant my team thought it was the right time and I decided to go for referral because even if they said I was too well I wanted to know for sure.

    I found that when the time came for assessment I was actually worried that they were going to tell me I was too well, I was just so fed up of being sick!!

    I know you feel like you are too well and that you're maybe not ready for all things T related but you have to think like this Sophie - when I went on the list I was relatively well but look how long I waited and how much I declined!! You never know how long you are going to wait, it could be day or it could be years but you need to be listed at a point where you have that time to spare!!

    I think talking to your team is wise but I also think you have nothing to loose being assessed, it's scary I know but you don't want to miss that window of opportunity. If you go and they say you are too well then brilliant but what if they think it's the right time and you wait and miss it? It's a tough decision but you're a strong and intelligent girl, I trust you'll make the choice that is best for you!!

    Love V x

  4. Sorry to read about how you've been feeling! Just wanted to tell you that I have CF too and I think your blog is brilliant.

    Josie x