Tuesday, 28 February 2012

Sprog has left the building!! ;)


Had a really good day out in london with lee!
Harrods wasn't all it's cracked up to be! Full of rich posh people, and tourists!
I looked at a few bits of clothing..found this gorgeous swimsuit...then was completely depressed when the price tag said £410!! Lee wasnt keen on buying it for me! How rude! Haha just spent rest if the time finding some of the clothing names amusing.. One was called agne...really!?!? Lol
We decided to ditch Harrods and go to TGI Fridays in covent garden Mmm was reem!

So then Monday....
Finally i am home!! 3 weeks later, fatter, healthier and ready to make the most of being well!

the ward was a bit crazy when I left yesterday, firstly i didnt even know i had planned to go home today, i didnt realise it was written on the board as my discharge day! although i had a small idea it could have been today but i never get my hopes up!

doctors came in to see how i was and I told them my sickness has gone, weight is up chest feels good as it can do, so i was a free lady, all i needed was my morphine to get as thats a new one i dont have at home.
they wanted to weigh me and to do lung function to make sure i was all good...

mum came up to pack all my stuff up and get it to the car which always takes about 3 trips down to the car before we go as i seem to bring EVERYTHING in with me lol but we ended up waiting for hours.. all the doctors had disappeared off the ward, they had been stuck in clinic and the others had been stuck in the day unit so no1 had done my TTOs or written up my drugs to go home with.

i was pretty chilled normally i become a stroppy bitch and just want to get out once i no i can go home, but I kept calm!
Decided after a few hours of having had my ivs done and waiting for the drs to write up my finally flush for my port I started getting restless and all I was waiting to take home was the morphine and even once the drs had written it u it was going to take a few hours for pharmacy to get it sorted as it takes longer to get this drug sorted because it's a controlled drug!! Such a palava so I thought to myself there's no say I'm waiting another 2-3 hours didn't want to hit london rush hour, so seen as though I came into hospital without being on morphine I'm sure I could manage a few days without it and could get it from my GP, thankfully Andrew from Pharmacy kindly offered to fax over my TTOs to my GP the next day do it would all be sorted! I just wanted to escape.
Didn't weigh myself or do lung function as everyone was so busy..I think they were happy for me to go anyway, they have decided that I have to go back in
4 weeks time to start IVs again, just to keep on top of things so depending on how I am il either start in hospital and finish at home or just do it all at home!

So got my needle out and I was free!
Felt amazing to be home, walking into my flat all clean and tidy (thanks to mum of course!) forgot how much I missed my comforts and most importantly MY BATH!! Oh and my double bed!!

Today got my nails done, so finally feel Girly again :-) had a little shop..got a weird thing about buying knifes at the moment...I'm not crazy or planning on killing anyone! There for cooking!! Lol and just enjoyed not being stuck in one room in hospital waiting for the next lot of nurses or drugs to come in.. I feel freeee! Some piccys I'm using an app on my phone so not sure how this is going to turn out
Love love
1,644 hours on transplant list

Sunday, 26 February 2012

Still In Hospital LOL

Well im still here Day Number 19!!

but im much happier now...after my last blog i really did sort myself out! im not feeling all down now and just want to get better, get weight on and get the hell outta the place! :)

 i managed to escape for a few hours the day after and have dinner at home with my crazy family and lee! was good to just be out of the hospital "ILL" enviroment!!
and i cooked dinner for everyone! :) only because im fussy on how i like my fajitas cooked...everyone seemed to enjoy them tho....i cant say i did much of the prep work and did not in what so ever tidy up ;) lol so just al the good bits!

i really didnt want to go back to the hospital later on...i was leaving all my fav people to go back to an empty hospital room on my own :( oh well the joys of cf!
i got my feed started and went to bed!!
sickness 0-1 george!!! whoop seem to be feeling soooooooooo much better, dont have the erge to vom and havent thrown up! so all is good. i havent felt like i cant breathe desprite the usually breathlessness just the usual needing oxygen!

doing really well with my weight...last time i checked it was 38kg!! BOOM!! see i knew i could do it! sickness has basically gone...only comes on now and then! i feel fatter! just feel more human again now and not a drip!  i truely believe that if your head is in the right place you can do ANYTHING!! sometimes you do need to shut down for your body to recharge! i am the only one that can decided how i want my life to be! if i want to make my whole life about being ill and struggling then i can but i choose not too!! your mind has a big part to play in how you live your life! not just with Cf this goes for everyone!

Friday i finally Moved rooms! was hard work..mainly for my mum bless her, she does so much for me. after giving up work and becoming my full time carer its great that i have her and not some stranger but jheeze she does above and beyond what anyone would do...she said she would do it regardless, and doesnt look at it as a "carer"  just being a mum!  but bless her none of the nurses helped....and she got all my stuff on my wheelchair and done about 6 trips there and back to the rooms which are at the opposite ends of the ward! good work out! lol oh and we had little amelie up who is 17 months old so u can imagine how fun that was for her! lol safe to say she prob hates my hospital rooms as much as me...there no fun! lol
wasnt the best feeling packing up all my stuff, felt like i was going home...but it wasnt it was too a SMALLER room...

right i no i should be greatful because i moaned about the last room, but i have moved into a smaller room, i can barely fit chairs in here i keep them in the bathroom along with wheelchair, the tv doesnt get all the good channels...it literally just about gets 1-5 then i get all the muslim and arab channels clear tho!! i got all excited when i walked in and saw a sky remote FALSE ADVERTISING!!!! lol
the bathroom is HUGE and is boiling but has a weird shower...its big enough to have a bath!! should have fitted one! lol
theres hardly any internet reception down this end of the ward lol
fulham road is SO noisy the buses and Eighty-Six bar is sooo noisy and all the piss heads shouting below!! lol

heres some pics of my room and the view....







im so ungratful...i am next to the kitchen which is great because i have started eating more because its right there and thats the most important thing!!

after the madness of moving friday we decided to have a little trip to westfield get some dinner and have a bit of retail therapy which i did indeed brought myself a nice little bracelet kiddies size but looks normal on my wrists hahah heres a lil pic



chest wise its up and down. since iv stopped my drip i dont feel as clear but that was obvious it was going to happen as it opens eveything up. yesterday i went for a nose down kings road with mum and my chest sounded awful. but i feel ok now. going to do lung function tomorrow to see how that is and no doubt il be weighed tomorrow but if all is ok il hopefully be out of this place this week.

something to add as we found this very amusing....
when my mum takes me out in the wheelchair and we have to press buttons eg for the lifts all of yesterday we were getting electric shots!! and i mean proper bad ones, haha it was horrible and hilarious!! sometimes u can even see the spark me and my mum now look like complete gomeys when we press the button cause were too scared...just wondered if anyone else gets this!? haha

anyways i best get myself ready, lees coming up to take me out to harrods to have a little snoop around! see what i cant afford to buy haha i dont think iv ever been before so will be a new experiance. :)

heres a pic of me being a loser before bed last night... hahaha


hope i look fatter :)

love love

1,583 hours on the transplant list

xxx

Wednesday, 22 February 2012

Just want to go home now...

2 months on transplant list today!!

emotionalllllllllllllllll

and im not even on steriods yet..although this evening im thinking to myself i need to man the fuck up and just get on with it...i seem to have gone into typical cf mode, feeling sorry for myself and just dwelling on being ill. this is what happens when you spend more than 10 days in here, its what it does to you, i bet theres a secret side affect to all the drugs there giving you!

anyway its like a light bulb has gone off in my head tonight! im in control of my body not these drugs therefore i decided what happens!

yesterday was a complete right off. i literally spent all day attached to my drip in bed feeling sicky and all :( i did managed to eat a bit of pasta and keep it down which is a plus! and they gave me this injection in my belly of levomapromazine which did sting like a bitch but wow did it work quickly! made me fall asleep tho.

woke up alter in the evening and had evening ivs and asked for it again....woke up this mornign with a brused belly as they had to go into fat..theres not many fatty bits on my body, so bellys a bit tender this evening.

woke up with bad chest pains this morning, but when i had my morphine it eased it which was good but fell back to sleep until my mum and cousin and beautiful amelie came up to visit and cause madness in my little room! lol didnt mind tho! ;)

but sickness has been like the devil and taken control and resulting in me bursting into tears today in ward round infront of one of the consultants and everyone...which then my mum joined in and others got a bit emosh!!

its just all too much. they are now aware that my weight is 36kg and that my bmi is only 16 when it needs to be 18 to stay on the transplant list!

i was prob a bit sensitive today, but find that they think i should be trying harder and mayeb i should but they dont understand how physically exhausting it is to throw up and feel sick constantly and also have trouble breathing....anyways after explaining everything to cut a long story short, there FINALLY moving me rooms 2moz to one literally next to the kitchen!!
iv just gotta try my feeds and then go straight to sleep when i start it, so basically take the drug that makes me sleep. and just see what happens.
i mentioned to them about a drug called megace that alot of people seem to advise but i was told this is for long term and its not right for me.....i may try again with this though as weight is and has been a problem for a long time and if i can get more of an appetite then it might help...will see wasnt in the mood for arguing today.

on a good note. my chest sounds clearer, lung function is up to 18% which im OVER the moon about seen as tho it hasnt been that high since before my lung collapsed last summer! my crp (infection levels) seems to be down. so just gotta get this weight on now!

im on it now...my bodys weak but my head is strong again.

i wont be beaten and all this hard work iv done to get me on the transplant list will not be affected by this! i dont have the time anymore to play around with my health... and every knock affects everything!

so im going to go have a nice hot shower (once the lady who is in there hurrys up dirty bitch lol)
get my ng tube down..get feeds ready small one, im not going to jump ahead of myself. get snuggled up in my nice new clean smellying duvet get ivs, get anti sickness and sleep and 2moz is a new day and fresh start! and need to get out of this place back to my comforts and lee!!

love love

1,495 hours on transplant list x

Tuesday, 21 February 2012

Just Feel Crap!

Right so the last 24 hours have got worse for me! sorry guys happy clappy george has left the building!! hahaha i officially am a drip..on a drip!! lol

basically before i even got the chance to sit back and enjoy watching the only way is essex last night, even though all i had eaten that day was a bit of cheese from nandos my body was refusing to keep it down and just randomly not even coughing this time i was sick! :(

so i got more anti sickness and the lovely on call doctor did pay me a little visit, but she said she couldnt give me any more drugs as i was on everything (i was expecting this but kinda hoped there was something else) i explained to her exactly how iv been feeling and about my feeds and that i dont want them to think that im not doing etc etc she said no she understands and she will pass over everything i said to them in hand over in the morning. so at least that took a little bit of worry off of me!

that was it for the evening eventually got to sleep later on....

So today!! Well! i was woken up by my first lot of doctors coming in, ovbiously the on call doctor had told them everything id said and explained about my chest and so they came in woke me up, my eyes were stinging i was so tired but i knew i wanted to talk properly to them. she said she would come back thank god....give me a second to regisiter my body had woken up lol get my breathing sorted so i wasnt a mess when they came back and try hold a conversation together- first thing in the mornings are my worse...when my chest wakes up everything moves and basically go into a massive coughing fit and need to relax and get my breathing right (or get as much crap up)

so they came back my fav doctor georgie...(wicked name dont u think?) lol
she asked how i felt etc i said relly didnt feel good chest felt awful and tight feel so sick cant keep feed or food down, just basically told her everything i had said before on here.

my mind has gone a bit blank to actually what happened and what was said...i think its cause i just remember the second visit... they all came back again to me about half hour-hour later but my consultant came in too. so i explained everything again to him. they decided to start me on a drug called Aminophylline which is a drip they have you on for min of 24 hours to however long they want to until they feel like its worked. it basically opens up the airways and loosens things in the chest etc.. i think.. god i hope im right...lol ud think id no all this by now..i dont lol

so my consultant listened to my chest and he said i sound full up and crackles everywhere, they wanted me to go for a chest x-ray to check everything, start me on the drip for 24-48 hours they also mention steriods. il go back to steriods in a min! so they left i got started on my drip! then my nurse came in to see if i was ready to go to xray so she could call the porter.. and i said yeah just need u to unplug me from drip and she said yeah she will do it when the porter gets here!!

haha well mr porter man turns up! and says to me, you georgina?, i need to take you for x-ray, i was like ok all happy can you get my nurse to unplug me from my drip....well he goes out my room saying nurse nurse...door shuts so i cant hear what happens but then the door opens and my nurse and him are having a little row lol i find this hillarious... the porter had the hump because i wasnt ready to go STRAIGHT away...baring in mind these idiots literally walk around and do things in there own time around the hospital...leave people eg ME for ages before they come and get you..so i was 100% sticking up for my nurse...she literally unpluged me flushed me, it took no longer than a min.

then you should have seen the patheltic excuse of a wheelchair he came up with! obviously i got a picture of the badboy! it was so uncomfortable! looks like something you could create on art attack with a bit of metal..im prob a bit snobby as it dont compare to my lovely one!


i also saw a friend of mine down in x-ray paul hes on the transplant list too...even he said "you wouldnt even push your dog on that" hahaha

and yet again i was left in x-ray by the porters for ages! didnt care too much this time as i had a little catch up with paul. always great to see him, hes such a lovely guy and really inspirational! really hope he gets his call soon!!

heres a little pic of my drip and an old feed i hadnt got rid of lol



Right so back to steriods....now me and steriods dont really get on very well...(by the way these arent the staeriods that idiots down the gym do injections in there bum to make them have false muscles lol)
they always make me feel so emotional and i swell up and yes i do end up looking like a fat hamster or moonpig as lee and his family call me!..well depending on the dose. now i dont care what i look like as my healths more important but i dont want something thats going to make me snap
(roid rage as bianca would say)
or make me cry all the time! you could prob tell me im not allowed to watch towie and i would cry over it! literally there a pain in the arse! however they do make the chest feel good...sometimes i think its quite fake as when you come off your body can feel worse because it adjusts back so this is another reason im always a bit funny about argreeing to it!
but they always really help with appetite and that is defo what i need may stop my sickness! so i said well instead of throwing everything at me at once and not no which one has helped try one at a time.... altho amo does make me feel really sick

and tonight my mum made me get on the scales to see what my weight was.
As i was walking there i felt as if i was a fat person who had eaten loads of cakes that week and knew it was going to be bad...except i was on the COMPLETE opposite end of the scale!!

when i got on it, i almost burst into tears when i saw it said 36KG which makes my BMI 16.2 so basically if harefield were to call me tonight i can kiss goodbye at the chance of getting a double lung transplant as they will not do it if your BMI is lower than 18! so im prob temp off the list...so this is actually the first time i really dont want to get a call from them as i think it would destroy me more knowing that something came up that was right for me and because of my stupid weight i couldnt have it! i would blame myself so much think it would really affect me!! im trying not to think too much about it tho. so im thinking for weight reasons alone im going to ask to go on steriods 2moz!

sooooo lets change the subject anyways!
i slept most the day and everyone was really sweet they all left me alone to just rest.
i was laying there thinking today and i didnt feel like giving up, just acknoledged that there are days where my body is clearly telling me to just rest and sleep and instead of fighting it and trying to act like i can do everything and be all positive..i gotta go with it!
i felt exhausted and iv done nothing much this weekend! anyway this evening after my horrible weigh in...i really tried to eat some dinner tonight after my mum rushed up here bless her! u no those days you just need ur mum!! today was defo one of them! she helped me get to shower etc tidyed my room and bed and made it all cosy for me...just showering literally wiped it out of me and saw myself in the mirror and looked so skinny its discustin! i actually felt sorry for myself hahahaha

anyways enough for tonight altho im gutted im not going to be going home 2moz like id hoped once really good thing im looking forward to is REFLEXOLOGY!!
sarah is amazing and can make any pain go away and just relax me!- could really had done with her today!!

love love

1,452 hours on the transplant list :( x

im all tucked up in bed now!



Sunday, 19 February 2012

The Return Of The Sickness!!!

Not having a good weekend.

I have no energy, feel like sleeping all the time and the worst thing of all my sickness has returned!!
i struggled alot in the past with my sickness, its one of the main things that really gets to me. its just so frustrating! for the last 3 nights now i havent managed to do a feed, the first two nights i didnt bother because my breathing was so tight and i was coughing so much i didnt see there was much point at pumping feed into my stomach for me to just throw it back up!

But my appetite has disapeared now too! ive hardly eaten and if i do get the urge to eat, im so far away from the kitchen i simply havent got the energy to walk there to heat food up!
Theres hardly any staff at the weekend, so cant get them to heat food up, and feel a bit like im taking the mick if i ask... iv been slightly put off by asking after i asked one nurse last week if they would heat up some food for me and there reply was "no i cant its not my job, il get in trouble" after questioning them about it and explaining that other nurses have done it, they must have felt guilty and in the end did heat up some food.....but now feel like i cant ask, i no thats absolutely ridicilous and silly but its how i feel!

So yesterday evening i decided to give a feed ago as i had a little read through my nurses comments and they dont explain how i feel, they just write down "feed not done" and i dont want them to think im not compliant as thats really not the case! and if the doctors read it without anyone explainging why i havent been doing my feeds they will just assume its because im lazy or dont want too!
So i got my feed set up last night, put my ng tube down and started it slowly at 8pm.

Everything was going ok. was whatching all the usually crap on Tv on saturday night. then it got to about 12 ish and my breathing started to go funny, it became really really tight and as much as i tried to calm myself i really couldn't breathe properly. my oxygen was on. i decided to stop the feed and detach myself. And do my bird machine really gentle to see if i could open my airways without having to cough my guts up or cough too hard...i knew if i coughed too much that there was a chance i would be sick and throw up my feed...really didnt want this.

So i took some gentle breaths on the bird on and off it, did this for about 5 mins and out of know where my lungs went made and i ended up doing what i feared and got into a complete coughing fit... i ran to the toilet and and just completely brought up my feed! was gutted also this was actually gross!! as you may no my ng tube is passed down my nose past my throat and down into my stomach, so when i threw up my ng tube came out of my mouth...so i had it in my nose and out my mouth its a horrible experiance and whilst being all dramtic and coughing i had to yank this tube out my nose as it was making me gag even more!

I was physically exhausted after all this! and could barely move, felt all dizzy and faint! stumbled back into my room, onto my chair and got my oxygen back on!
i felt sooo sicky, i was trying not to be sick anymore. i called my nurse, she took so long to come, and she eventually came and i asked for some anti sickness she literally came in, turned my buzzer off listen to what i said and walked out....
its like she was oblivious to the fact that i was strugglering. hay ho cant have it all.. there were other buzzers going off...she didnt take long to get my anti sickness by time she came back i got myself back into bed and told her i couldnt manage to do my feed again...and she seemed so shocked like why not... i didnt even care, i was knackered i just said to her i feel crap and just thrown everything up!...obviously lol

She left and i just went to sleep. but this is why i didnt do my feeds the other night as i dreaded this.

I havent eaten much today apart from nandos got myself some lovely halloumi cheese...managed about 3 of them and some chips.. appetite is rubbish and im so pissed off about it!

I really want to try and do a feed again tonight and dont want to give up, but really dont want to go through all that again, i feel sick as it is tonight.

Iv asked the nurse if i can see the on call doctor to see if i can have an extra anti sickness as a one off to help, just to get me through tonight and then i can see the cf team 2moz and speak to them.

Part of me thinks all this is happening because they have changed my i.vs from ceftazidime to meropenem and i might just be reacting to it! who nos either way im not enjoying this feeling at all and i just want to be full of energy and on the mend again.....feel like im taking a massive knock!
and weight is so important to be on the transplant list i really cant afford for all this to be happening to me! as i make a big deal about it i am a postive person but im feeling really down this weekend and fed up! really hope things get better in the week as i was looking forward to going home, but at this rate i wont be going anywhere! :( just want my own bed and lee cuddles.......

Thats all....just gna wait to see what they say. watch TOWIE and just go to sleep and start all the dramas of foulis ward 2moz.

love love

1426 hours on transplant list


Saturday, 18 February 2012

Up/Down and being a Human Pin Cushion!

Getting a bit lazy at updating this!

Chest hasn't been as good as i thought it was for the last couple of days. i think all the drugs are stirring things up and getting all the rubbish from the bottom of my chest ,off my chest but in can make me feel worse before it gets better. my crps (infection levels) are up and down alot at the moment so wont be heading home until there down and stay down.. :(

I try not to panic and relax but out of no where i all of a sudden just cant breathe, my air ways close up because mucus (sorry this is GROSS) gets stuck and stops me from breathing and i almost like not get scared cause i no what it is just need to relax make sure iv got lots of oxygen and get on the bird...

the bird pushes the blast of air into my lungs and because i use it with saline its moist and unblocks whats stuck to get it up so i can breathe again...but its takes a good few mins to get it up and its hard work and so tiring sometimes and esp when its hard enough trying to breathe because its blocking my airways taking a deep breathe is hard thats why thankfully as long as i take a tiny breathe to trigger the bird off it does all the hard work for me! but once its cleared i feel good again and carry on! 

its just a bit annoying at the moment because its happening alot through the day and night, and just making me so tired, all i want to do is stay in bed and sleep! im hoping this wont last for too much longer and il be back to how i was feeling the other day full of energy and excited about planning things for when i get out and make the most of being well before i start to dip again!

iv been thinking alot recently about my life and as positive as i am and will never not be i have only been given rouhgly 2 years left to live last july 2011! so i am also not stupid and i am quite realistic! i no its only 50/50 that i will get a transplant and despite being in a good blood group for my size...there is always the fact that it might not happen! and i do worry about this even if i dont show it, my mum nos how i feel, i dont think abotu it alot and i dont hide it aswell, but when i do think about things it worrys me that i am so small, im only 4ft11 and to find an adult that size who has signed up for organ donation and agreed do help, its pretty slim chance!! BUTTT just because of this i plan to spend this part of my life planning and doing as much as possible so if i dont get a transplant and the worse comes to the worse and i do die at least i no i made the last few years of my life amazing and that i wasnt just waiting to get a transplant or die!

(sorry this is a bit heavy but i want to be honest in my blog!)

apart from all of this, it might come as a shock but i genually do feel mentally that this is one of the happiest times of my life! i no people might not understand that but this is the gods honest truth! alot of things have become clear to me, who my real friends are, how close i am to my family, how much i appreciate the people who do things for me and the people in my life!
people who genually care about me!

ok the physically side is a bit shit but because things have taken a dip and life has changed so much, iv taken a step back and just looked at everything and i cant wait to get a transplant and fulfill the next chapter of my life and do things id never imagined i could do and actually be able to breathe!! and knowing who iv got around me and who is important to me and means alot to me, once iv got my transplant i cant wait to show them how great they have been and enjoy my life and help them too! give my mum and lee and break for once and do stuff for them!! il stick them in a wheelchair and take them out shopping!! and run around after them!

anyway enough soppy and miserable stuff...time for a good old george MOAN ;)

For the last few days i have become a pin cushion on the ward! everyone wants my blood!! there like bloody vampires or something!

so wednesday i was told i need blood gases done to check the carbon dioxide levels in my blood, i cant remeber exactly but i think my consultant said it was cause i was sleeping more and i had a few headaches in the morning once or twice so thats is sometimes a sign that im not getting rid of enough carbon dioxide out of my body when im sleeping etc or i could be havign too much oxygen or not enough bla bla bla

these tests have to be done first thing in the mornign when i wake up.
now iv had blood gases before....they have got to be one of the worse blood tests you have to have!
my nan always said they were horrible but as a kid they never did them! wasnt until a few years ago when my health started declining more that they started checking them....

right so these lovely blood gases arent done by the usual going through a lovely juicy vein which no doubt most of the population some time in there life have had... nope these ones are DEEPER and you cant see the vein that there going into an artery. and the way in which there done is by feeling for a pulse on your wrist! so like you do if your feeling for your pulse you put two fingers on wrist and you can feel your heart beat....so they do that and then literally with a need as if there stabbing you they go straight down and dig around most of the time and once they think they have it they pull back and if blood comes out then hopefully they have the right artery and not a vein.....its a bit hit and miss!!

anyway so thursday morning comes and i was dreading it a bit. doctor comes in, she is lovely and i was half asleep so i just put my right wrist out for her to crack on....so she feels...feels some more and goes for it...dig dig dig...no luck....little more digging hits the bone CRINGE lol so by this time im pretty awake! lol so trys pulling back but cant get anything, so i see shes struggling so i say like try the other hand if you want!? so she does

left wrist out...feeling again bit more feeling goes in for round 2 dig dig dig (no hitting the bone this time tho) trys pulling back but just cant get it, carrys on digging but by this time i couldnt handle anymore id maned up enough, so i just said look can we leave it its starting to hurt and all i kept thinking was id rather she stop now before both wrists get completely brusied and no1 will be able to do it again! cause they really bruse like a bitch lol so she agreed to stop, and said maybe a different set of hands need to try 2moz (she ment another doctor obviously not my hands!) lol so that was a bit of a fail but i was ok with her she tried her best and they are tricky

so i see the doctor later on in the evening...she poped her head around the door.
i have a bit of a funny relationshp with this doctor (a completely different one) i always find she doesnt really listen to me, or just asumes things, maybe just miss comunication between each other.
so shes says in her little polish accent about having to have blood gases again in the morning, and  that my wrists werent very good and i needed to go to lung function to have them done on my ear! well i was defo NOT up for this and was a bit like in my head ermmm there is nothign wrong with my wrists actually it was the doctor, iv had it done loads on my wrists clearly the dr wasnt very good, iv always refused to have it done on my ear...freeks me out a little.
i did snap at her a little and got all grumpy so she left me for a few mins and mum got me to calm down and see reason lol and she came back and i agreed even tho i really was not happy about it! best bit of this tho..i said to her "does it hurt on your ear?" and she was like no no its fine.."how do u no? have you ever had it done?" and the reaction on her face was priceless...she laughed and was like oh my god no as if to say... no way i would have that done.. CAUSE IT HURTS! .. bitch lol

so friday morning comes, i was really unsettled in the morning, i was dreading it!
the phlebotomist came in to do normal bloods first thing (as if i wasnt being prodid enough) but that was normal blood test which was nothing...then i went back to sleep. the normal doctors came in about 10am and i said i wasnt keen on having blood gases in my ear and didnt no what to expect. so she felt my pulse and a different doctor agreed to having a go at my wrist again.

cut along story short he tried and got blood but the results come back weird so he gathered it wasnt from my artery so i had no choice but to go for the ear option!

this is how it went..

porter come to get me...
took me and LEFT me at the phlebotomist place..the wrong place.
they couldnt get hold of another porter for ages!
finally they got hold of one
he took ages to come
i was sat outside where the phlebotomist department is.
in my pjs
beside people going to clinic!! i hope to god they knew i was an impatient and not a tramp going to clinic in my pjs
also was placed under the ticket thing so people could wait to get there bloods.
was completely agged
then finally a porter comes
takes me to lung function
i have to wait to been seen
finally seen and shit myself!!

right so at this point i have no idea what to expect... he puts deep heat on my ear lobe! then wipes it off after a few mins, puts a wet tissue around me ear lobe on me thats boiling hot.
then slices my ear with a blade!!...FML kills
then the blood just drips out of u!!
then i looked like a twat with this thing on my ear to stop from bleeding ...

so once that was done i was left to wait for a porter to come and bring me back to the ward...did he come straight away?? no course he didnt because that would have been what i wanted..i was left there for a good 20-30 mins..again sat there in my pjs whilst people came from clinics and god knows to have there lung function done...this is a specialist hospital so some people only come here like once a year, again i really hope they know or assumed i was an impatient because i had my bed hair up like a pineapple ...no make up, no bra on lol in my pjs with socks on just sat there and now with some stupid plaster on my ear!! jheeze i looked HOT!!!!

then to make things just that little bit better, some old guy was parked up in a wheelchair behind me! coughing his guts up oh and then i couldnt get signal or internet on my phone! as u can imagine i was in a delightful mood and just wanted my bed!!


finally got back to my room curled up in bed then i had physio :( lol and once that was done guess what.... MORE BLOOD TESTS!!!!
 id agreed to this trial where all i need to do was have a blood test so at the time when i agreed to it i was fine but after the morning i had ,  i just wanted to be left alone, but the woman had no idea so i just let her crack on she took 4 fat tubes of blood and finally i was left to relax!!

was just one of those days!

spent rest of the afternoon chilling getting ready and looked forward to going out for dinner with lee got myself looking half decent! well better than id shown myself off around the hospital!

was nice meal at pizza express :)




 my dinner mmmm




thats all for now.

love love

1,396 hours on the transplant list!!
xxx


Wednesday, 15 February 2012

Another Iron Infusion!

I dont feel like im very exciting at the moment to blog! all the intresting bits of coming into hospital and having a few interesting conversations has all calmed down now...for me thats good though, so sorry if your looking for drama no can do at the moment ;) lol

Valentines day started off as a bit of a ERGH day...my chest turned on me a bit decided it wanted to give me lots of pains, coughing was really painful, and i seemed to wake up with the worse headache EVER it felt like the top of my head was going to explosed!

i had already had two lots of morphine in the morning too ease of the chest pains but this bad boy wasnt going, i couldnt do physio i was struggling they saw i was, so thankfully i was not made to feel bad about not doing it! so i went back to sleep and woke up a few hours later around lunch time feeling soooooooo much better! chest pain had eased off and the head ache was gone.. shweeeeeet!!

so then i did my physio.... think i need to introduce you to my "bird" ;) .... no its not my gf, im not a lesbian lol its a machine that helps you open up and blast oxygen into you so you breathe deeper... its amazing and its effortless i love it, heres a little piccy


i have something simular at home called an i-sleep which i use for my physio but it doesnt blast oxygen it blast air and its a bit differcult to control we have a love/hate relationship lol.

so yeah the day got a bit better i brightened up, my lovely auntie pam came to visit me.

couldnt see my lee as he had work and didnt want him coming up all agged and tired and smelly from work and then havign to leave early not much point so were having our lil valentines day on friday! altho i did wake up to some sweet and not so sweet textes from him...not going to repeat on here tho..theres some parts of my life i wont be blasting over the internet ;) lol

then in the evening i saw my two beautiful ladies daisy and lauren! which was good, little catch up and a curry and my big fat gypsy wedding!! was defo a good evening!!

so that brings me to today!

i feel soooooooo good today full of energy...think its a mix of the i.v's and the 3 redbulls i have drunk!!
it was the big ward round today and saw one of my lovely consultants! everything seems to be good, my crp which is my infection levels they check through a bloody tests have been a bit up and down but everythigns going in the right way my lung function is up to 15% which is really good! (for me)
weights up to 38.4kg although i think its about 39 now!
just need to keep ontop of the weight, come so far getting and being on the transplant list, i dont want to be taken off because im underweight just need to push on and make sure i get myself at least to 40-41kg!! and stay at that!

also had a little visit form my lovely girl Bianca and her bro dan! she was up on lind ward so sneaked down avoiding the consultants once she was finished, she also has cf and whilst were in hospital were not ment to "mix" with each other as they have rules about cf patients mixing because of infections and bugs they have etc etc but me and bianca have been close mates since we was about 4 years old and were not just friends because of hospital, we hang around with each other and go out together outside of here and live like 5 mins down road and simular group of mates etc so its hard to follow these rules...and we have all the same bugs anyways lol ..but seen as tho they have a complete fit each time they see us together we cant see each other whilst were under there roof lol so we do a bit james bond movements around them! lol haha anyways shes had a rough time at the mo and had an op on monday so was here for a check up! but all in all was good to see her :)

i had to have another iron infusion though becuase it is still a little bit low! and they want me to keep topped up, as this all is for being on the transplant waiting list too!
so heres a few pics of my iron infusion, there was alot more than what i had last month! looks so weird!!




oh and this is my boob........haha well im not lying but this is where my portacath is, a portacath (port) is like a perminat thing which is a round disk kinda thing under the skin which is attached to a vein so they is always access, just saves me and many others having to have canulas, canulas dont last long etc...this needle isnt in all the time, you cant see anything normally just when i have to be on anti-biotics etc the needle is put in. sorry if i havent explained very well just google portacath lol.


so hopefully thats me topped up with iron for a bit then. hopefully wont have to have it for another 3 months...its doesnt bother me, it doesnt hurt or make me feel weird so they could do one every day and it wouldnt bother me :)

oh and not forgetting the BEST thing about Wednesdays on Foulis Ward issssssss hummingbird CUPCAKES one word REEEEEEM!!!! :)


 
i think thats all for today.

love love

1,327 hours on the transplant list x

Monday, 13 February 2012

Day 6 of hotel brompton!

So its day 6!- 149 hours iv been in this lovely hospital!! (im not a geek that sits here counting, although the bordem can make you do strange things in this place but...i have a cool little app on my iphone!) lol

the weekend was pretty standard, my lovely family looked excited when they came up on saturday to see me!! hahaha dad does his usual, grabs a seat, which happen to be in my wheelchair this week as the girls had already taken the chairs, also bare in mind my wheelchair is fitted for my size person and no offence to my dad but he is ALOT bigger than me lol, so yeah he grabbed his seat, pulled out his newspaper and says "whos getting me a coffee then" lol

Then i had my delightlful sisters as happy as ever, dad had probably wound them up in the car on the way up to the hospital or one had looked out the other ones window lol teenage girls in moods=beware!
also not sympathletic to me being in hospital at all, lil libs had a sore throat and it literally was the end of the world!! nothing compared!!- obviously i had no idea how it felt to be ill ;) then theres hannah who was just in the biggest mood ever because most of her mates had gone on the ski trip and she could have gone but decided not too...and she couldnt understand why we had to go out down the kings road! lol

it was nice to have some normality! growing up and not being treated as a "sick person" means the loved ones around me eg my sisters really are just like normal sisters and dont treat me any differently which i like....id hate it if they all came up and did the whole "oh george you ok" and sat there holding my hand.....ergh bucket please lol

so we all got ready, i put on 1000 layers as it gets chilly in the wheelchair when ya not moving about, oxygen on the back incase i needed it, esp when that cold air hits my chest! its horrible.
oh and to make me look even more special in the wheelchair mum brought me up a pink blanket to put round me whilst in the wheelchair....shes been trying to do this for ages...make me look like a complete goon basically!! she likes to break me into these things when im in hospital because she knows i dont care going out looking like a fool around here cause i dont no anyone!!

anyway despite what i thought it kept me warm and i quite liked it!! mums are always right ay! :)

so we looked in a few shops then decided to go to maccy d's!! the one down the kings road though isnt very wheelchair friendly and theres about 6-7 steps to climb up to the doors..so obviously i had to get out the wheelchair so dad could lift the wheelchair up.

now i dont no about anyone else that uses a wheelchair in the same situation as me, but theres always that awkward feeling of getting out, most people asume your in a wheelchair cause your legs dont work, well thats not the case for me and others...its our lungs that dont work. anyway so when i like stand up and get out i normally dont really wanna make much of a fuss just get on with it and not draw attension to myself, so i do so i get out of it, and then i hear "its a miracle, its a miracle" and i just cringe and turn around to see my mum laughing and jumping around like a fool!!- u no those days when your just not in the mood..it was freezing outside and just wanted to get in, looking back now it was quite amusing! bless her!!

so that was saturday, then saw my jd-lee on sunday, just chilled got a curry and some more redbull :)

over the weekend, iv been trying the morphine in the morning and asking for it before i go to sleep to ease of the pain so i can relax and get comfortable, it seems to be helping, need to let my guard down with things esp as they clearly can help! i feel quite in control of this though so i think im going to agree to carry it on if they think its right too.


todays been a chilled one,chest seems to be pretty good, i.vs have definatly kicked in! chest doesnt feel so tigt which is nice, my sats seem to be higher than usual staying at like 93-94% on room air :) thats without talking and sitting still but still thats good for me! :)

weight hasnt quite got up to my goal yet which is 40kg but it was 38.4kg today so thats better than it was when i was admitted so anything up is a plus for me!
doing my lung function tomorrow so really hope thats gone up from 13% . also got my new fatty drink called calogen today with all the calories in it and it smells like strawberry marshmellows...but looks like pure pink oil!

oh and the highlight to my day has got to be my new pill cutter- i no thats really sad! but iv never had this colour before lol

and heres a few more pics of my miracle anti-sickness drug! cost £50 for 2 tablets iv heard...personally i think there paying more for the packaging!

and for anyone that hasnt seen a feed machine before heres a little piccy


thats all i can think of saying for today

1,282 hours on the transplant list

love love xx

Friday, 10 February 2012

Starting Morphine?? :S

This is only a little blog tonight as its fresh on my mind.

I had a pretty terrible nights sleep. spent the whole night coughing barely slept at all! chest was awfull just couldnt relax or catch my breathe! and all i wanted to do was sleep but my lungs had other plans!
anyway i made up for it because i didnt wake up till gone 12ish this afternoon! :) the SHO dr that came to see me this morning wasnt too impressed but i literally couldn't hold a conversation with him, you know that feeling where you almost feel drunk your that tired and my eyes were stinging i couldnt focus on talking to him, i did ask him to come back later on but he was having none of it...he probably asumed i had just stayed up all night on my laptop or watching tv lol and i didnt get a chance to explain why i was actually so tired lol. oh well i dont remember him leaving my room so i must have fallen back to sleep! :)

so i had a little visit from jackie the woman from the palliative care team...and like i was promised there was no black robe or cross!! haha actually she had a lovely outfit on and a massive smile on her face!
so i automatically felt relaxed with conversation we were about to have!
she just wanted to get an idea of how my pain was etc and she suggested a few things like having a patch on me to relieve me throughout the day..but i wasnt keen and she suggested to have stuff throughout the day and again i wasnt keen on the idea lol (im a pain in the arse).

i just feel like i dont want to give in too much yet...i dont feel like im ready to start giving up or showing weakness (even if this sounds stupid) like its a big thing for me! i want to be strong, i want to be in control of my body, and if it means dealing with a few pains il just get on with it, i wont think twice!
i dont want it to be the start of others stuff...im in denial sometimes of my situation.

BUT we came to an agreement that as my pain is worse in the mornings when i just wake up, shes suggested that i have morphine then. and its on request so if i feel like i need it during the day i can ask for it.
im not sure i completely feel like i want to have it but iv agreed to try it this weekend, just to see how i feel about it and weather it helps. shes going to come back and see me monday morning.

i think i need to just be grown up about it, if it helps with the pain at least i can push myself to clear more off my chest without worrying or holding back because of pain so for that reason alone i should go for it, and stop looking at it as a negative or failing but as a positive and that long term will keep me going and help me stabalise and get better even!

so yeah that pretty much sums up my day...oh and appetite seems to be getting much better, had a really great nurse today and hes heated me up both my currys today which iv eaten and now doing a massive feed! so im expecting to weigh at least 39kg if not 40kg by monday!!


1,209 hours listed on transplant list.

love love xx

Thursday, 9 February 2012

Exhausted!

Think its safe to say that last night completely wiped me out, which i was expecting to be honest! i hardly did anything i literally walked slowly down to car with oxygen on...was driven to riverside studios by the lovely bianca in her big beefy car!, then pushed in wheelchair to enterance...also with oxygen on and then sat down for the evening...although did join in a little bit with the first lot of dancing but when it came to the second time round me and bianca decided to sit that one out! lol but that was it. was only out of the hospital for 4 hours and its completely wiped me out today.

ive had a pj day and hardly moved out of bed :)
woke up this morning with my lungs aching, had the worst chest pains, felt so sore...it eased as the morning went on, either that or i got use to it...il go with it eased away :)

my lovely reflexology lady sarah who visits most of the patients on the ward poped her head in around 1ish and iv never been so happy to see someone! she makes u feel amazing! shes a little touch of heaven!!


she was in here for ages it was great. when she was coming to the end it was cut short though as my consultant dr bilton and her crew came to see me. i completely forgot she does her ward round on thursdays.

we had a few interesting conversations. dont think she was keen on the idea that i went out yesterday, but tried to brush past that subject as dont really wanna upset her or piss her off!

then shes sugested that i see the Palliative care team!! well that word just freaks me out....she said she trys not to call it that and did tell me what she likes to call it but completely forgot probably because iv got this one stuck in my head!! the first thing i think of when i hear this is like they use it for cancer patients who are dying and there nothing more they can do so they make them feel comfortable!!
even google says this "those living with chronic diseases, as well as patients who are nearing the end of life"

well i most CERTAINLY do NOT see myself in this situation!! ok i know back in the summer i was told i only had 2 years left to live with my lungs probably but im a positive person and take each day as it comes so giving up is NOT an option for me!!
so this team starts alarm bells ringing in my head!!

they mentioned it to me before at the harefield asessment but i was all smiles and took the womans card and just dismissed the conversation...didnt ask many questions and just hoped the woman left my room as soon as possible lol and now its come back to haunt me hahaha im making this sound so dramatic! its really not!!

anyways so iv agreed to see a woman from the team called jackie, and have been promised she wont come in covered in a black robe and with crosses and stuff! hahaha were just going to "talk" about my options and about the pains in my chest and to see if i want anything....

but i feel that its good sometimes to feel a bit of pain, to me it feels like i know when i need to do something about it, for example if i couldnt feel any pain how would i no if my chest was bad or not? i have good and bad days all the time and when i start having more bad days eg with more pain i no i need to do somehting about it! oh its all so confusing and hard work!!

also had a slight nag about my weight.... but promised i would do my feed tonight which i am doing as typing!

after i saw the docs i had a visit from my favourite dietian!! kate!!
so going to start this thing called calogen or something?? apprantly for every 120ml it has 800 calories!! thats crazy defo need this in my life!! so with normal food that and feeds il be a fatty in no time ;) hopefully!i need at LEAST 3000 calories a day! lol also shes going to get them to do blood tests to check my vitamins etc make sure im on all the right stuff!

so yeah just spent rest of the afternoon being entertained by miss miller sending me voice recordings! if i could get them on here i would...although dont think it would sound as funny and might be a bit cringey!!

then also got this very little text from holly haha...its not what you no its who u no!! ;)



so thats me for today

1,184 hours on the list!

love love xx

A day i wont forget quickly!!

Firstly want to start the blog with a little RIP Sean! sadly its been 10 months today since we lost him, he didnt have CF but was a close friend of mine and not a day goes by i dont miss and think about him! would do anything to have him and josh back! :( RIP the miles brothers xxxxx

right so today was my first day on the lovely Foulis ward Room 2 at the Royal Brompton Hospital!
the days started with being half asleep and having a stupid needle prick on my finger to test my blood sugars. there always fine but its routine they have to do this for the first 48 hours! they were supposed to be monitored all day...iv only had one, i think due to the fact they have to do them before or after i eat but as the kitchens SO far away i didnt eat anything til about 4pm lol BRILLIANT!!
to be fair i had a lovely nurse who offered to heat my food up whenever but in between nurses doctors physios in and out and her having to not only look after me but others and do there ivs it not that easy to time it right!

i had planned to go to celebrity juice tonight with mickey and lee, because of work lee couldnt go but bianca took his place :)
we had to be there at 6....but before that i had the battle of persuading the doctors to let me out....there normally pretty cushtie with us patients going off the ward as long as its not when drugs are due and were well enough to...the battle for was the fact i hadnt even been in hospital 24 hours yet!
but after working the george charm and having the wonderful georgie as the doctor she said its a one off as i was so excited and "lifes too short" i was over the moon! alothough explaining to her what celeb juice was i found out to be moved differcult for the pure fact she doesnt own a TV!! wtf! so i might aswell have just been talking to myself! lol

anyways i got myself ready, took a while, this room is freezing!! and my shower is a joke...its bad enough having a shower as i find it better to have baths but this shower doesnt even bloody work properly!! the curtain doesnt go round...the shower head doesnt go on the bit its ment to so i basically had to sit at the bottom and use the shower head like a gomey! and i had a lovely draft coming through the vent! the whole experiance wasnt pleasant and has put me off washing...so if anyone comes to visit be i might need to go for the festival wash for the next few days with baby wipes, i cant hack the ordeal! i get tired washing normally let aot when its cold and differcult!!
im keeping a note of all these things so i can have good reasons for them to move me!
this is my shower!
seen as tho i love taking pics got a random photo of theguy checking my pipes!! lol

lastly and most importantly Celeb Juice!! it was amazing!! best tv thing iv seen live ever!! we was so lucky to get in, so many people were turned away because it was so full!! and we got special treatment...well we got seated first and right at the front all because im gomey :) comes in handy sometimes!! was really good people on there... obviously keith lemon, ferne cotton, rufus hound and holly willobooby lol but phill schofield was on hollys team along with christine bleakley and chris fountain was on fernes team! was hillarious! had a reallt good night!
completely clapped out now! looking forward to seeing it on tv 2moz, see what they put in!

finished just after 10 so bianca took me back after stopping for a cheeky maccy d's!! so glad mickey asked me to go! true legend!! will ahve to return the favour somehow.

so all in all good day! looking forward to resting tomorrow and for the rest of the admission, lots of sleep, lots of drugs, and hopefully lots of food!! get these lungs all better! or as good as they can be.

oh and see these lovely hummingbird cakes i walked into on arrival back to the hospital, was pretty  chuffed! we gone from krispy cremes on wednesday to gorgeous cupcakes!! defo impressed!





Bang Tidy!!

1,164 hours been listed for transplant

love love x


Tuesday, 7 February 2012

Got a BED!

well firstly i started the day not feeling very positive about getting a bed, it was almost 11am and when theres a bed for me i normally hear before 10-10.30am so i just assumed i wasnt being admitted.
also rung the oxygen company first thing to see what time they would be delivering my liquid oxygen tank and they said they couldnt tell me a time just would be afternoon! which was a pain! hate not knowing times etc! but it arrived about 2 ish so i now am a proud owner of this beautiful tank!
its alot smaller than i thought it was going to be!

so as i was saying i hadnt heard from the hospital untill a little unkown number poped up on my phone and it was the brompton (not harefield) lol bed manager to say there was a bed for me, which was great untill i found out it was biancas room i was getting. few reasons why i wasnt as happy

  1. bianca was going home so i wouldnt have my buddy in there...although was happy she was escaping!
  2. shes been going on about how her room has a ghost in it!
  3. its right down the other side of the ward...so far from the kitchen so id need oxygen to walk that far which sounds ok but its really not easy to pull or carry oxygen along whilst still struggle as oxygen isnt a miracle cure and have to carry heated up food!!?? you'd think they would put this into consideration! i no beds are limited but they could move people about...and when i saw the people that are near in the room that was free today next to kitchen, there not on oxygen...dont need a wheelchair and would prob love a good little walk to the kitchen! :( just a bit unfair in my opinion...they dont look like there waiting for a transplant or struggling to breathe...im being bitchy now but just really upset me earlier!
  4. and also there is only a shower which is old school but showers always make my chest go so tight and funny...and the bathroom is like a cubboard!

i sound really ungrateful but these thigns are frustrating, i come in here to get better and these little things would make my hospital stay so much easier and i would prob get better quicker! i doubt il eat much il prob just do feeds instead!

anyway enough moaning i still brought £40 worth of shopping from tesco and look how pleased i look to be in my wheelchair with a special bit attached onto it...mums been dying to do this in tescos since iv had the wheelchair...i only agreed because i dont know anyone around chelsea!!


 

after tescos trip i got back got into my pjs and got all cosy had a little sandwich then my lovely scottish nurse debbie came to access my port and start the i.v's she also told me they had just contacted harefield to let them no i was an impatient incase i get a call and to let them know how i am etc that was a bit weird. good weird though.

needle went in all good first time, she got me the kiddies oxygen and water thing that attaches to the oxygen on the wall so its not so cold for my little nose!



right my eyes are shutting so tired after taking my anti sickness....doubt they will be able to wake me up 2moz! haha

oh and last few things! i found an organ donor..my mate rach shes small and same blood group as me a+ lol just gotta kill her off now haha only joking although she did make me giggle when she told me!

and been on the transplant list for 1,138 hours now!

night all, one love x

Monday, 6 February 2012

Hotel Brompton fully booked!!

1,113 hours i have been listed now.

so my chest has decided it cant handle me pushing myself anymore now and needs some TLC!
i rung up the brompton last week and was told i could see someone friday up at lind ward but the doctor i normally see, doesnt always seem to listen and i was feeling rather rubbish so just decided to go with clinic on monday (today) so they fitted me in!

i definatley pushed myself over the weekend but it was worth it! my best friend (daisy) birthday party at mine saturday night, had all the girls over. good catch up and giggle, couldnt all stay as it snowed and some had work in the morning but i think daisy enjoyed herself which was most important! my chest was good and bad throughout the night, had to sit on my oxygen at times but as stupid as it sounds didnt want to sit on it too much infront of every one as i didnt want the night to be all about me! although after laughing so much and throwing snowballs in the flat i had no choice but to sit on it! lol felt a bit sorry for daisy when we went to bed....my chest is always the worse when i settle down to sleep and couldnt stop coughing and was struggling to breath and was trying not to worry daisy or annoy her too! she prob kill me for even thinking let alone saying that! anyway i made her some cupcakes and decorated a birthday cake for her! heres some piccys :)

it was black icing with gold shimmer on it...just looks brown tho!


daisy and her balloons
me and daisy in our onesies :)

me! lol


so then SUNDAY myself and lee (bf) went to see Olly Murs in concert at the o2 Arena in London!! i got the tickets for xmas form my cousin sally! was great had good time, seats where good and good view of the beautful olly! hes such a great performer!

my chest was pretty rubbish on the way back and i was so exhausted i actually managed to get to sleep straight away that night which was the best feeling ever!



which brings me to today!

well firstly i saw hugo and millie from made in chelsea whilst looking for a parking space outside the hospital! lol

then got to clinic weight was only 37.6kg :( and had my xray to make sure i didnt have an Pneumothorax because of all the chest pains i have and been having but it was ok just full of mucus the whole x-ray was cloudy! id love to see it compared to someone who doesnt have CF when you see it in person i wonder how i can actually breathe altho it does explain my 13% lung function. i took a picture but the flash actually made the x-ray look clearer shows alot more black when actually it was clouder but i will show u below


anyways we all agreed that i need to be admitted pretty quick, they tried for a bed today but there was nothing which was rubbish, i thought by being on the transplant list i would have some sort of priority of getting in as i need to be well enough for when i get my call, i was told i would be next to get a bed just couldnt today!! fingers crossed they will squeeze me in tomorrow!! get me all well again and get soem weight back on me!! and fingers crossed they will let me out for celeb juice on wednesday...might cry if they dont!!


and just a little add on...im so addicted to twitter at the moment...and apart from the fake followers iv got after clicking a link i do have quite a few real followers now!! whoop go me! :) also some actor retweeted me without me asking! lol his name was ben richards and also wayne lineker replied to a tweet i added him to that i got involved in to help @BarnesBoysM get a reply from gary lineker so all good, gona try work on some celebs to get these "get it off your chest" t-shirts!!
 gonna get myself one too!! 2012 will be the year CF will be known!!

thats all for now love love x