feeling well and RIP Kelly xx

Hey!!

Lack of blogging due to freedom!! Left hospital on the 15th and couldnt wait to escape, was getting very frustrated in that place at the moment, was in ultimate bitch mode the day i left....the new sho doctors were pushing me, takes them a few months to settle in and get use to dealing with CF patients! lets face it we aint the easiest of people but ignoring us will not make our life or their jobs any easier!!

well i have to say for the first time in god knows how long i actually feel like a normal person! im amazed at myself! normally at this point 2 weeks since iv left hospital 9 times outta 10 id be heading back in again! but no not this time, i seem to be on a proper buzz at the moment feel so good, hardly using oxygen, weather i need it or not is another matter but im not struggling half as much as i usually am, when i do get a little bit funny my sats have been like 85% off oxygen but as soon as i go on my oxygen they go straight up to like 97% then come off oxygen and they stay at 96-95% so pretty flipping good i think considering im "on the transplant list" i must be a faker ;) hahaha

like i said i think im on a buzz at the moment, weathers soooo nice, been topping my tan up plus going on sunbeds :) busy doing up the new place...or shall i say watching lee doing it! lol and been reading up so much on this new drug, mentally getting myself ready for it, its seems to be having amazing results over in america! just hope when i go to see the doctors on tuesday they will no more about it and let me when i might be starting it.

iv come to a decsion also after reading about this drug, that i might ask them to take me off the transplant list for a few months, this might sound absolutely crazy to some people, mum and lee fully support my descion....but....

transplant is supose to be a last resort yes? well now they have offered me this new drug i feel like well that transplant isnt a last resort yet, if i was to get a call for transplant now, i would fully regret having it for the rest of my life knowing that i didnt try everythign else first! transplant isnt a cure it comes with alot of problems its self, so not doing everythign and trying everything first would be a complete fail on my half!!

also transplant is so precious, i wont feel like il appreciate it enough, my heart wont be in it!

if i try this new drug and nothing improves then yes il be back to sqaure one and back on transplant list and my head will be exactly the way it was before this drug was mentioned if not more because at least then i will no i did and tried everything!

all a bit crazy stuff going on in my head.

also had some really sad news after leaving hospital last week, one of my cf friends sadly lost her battle and died the friday after i left foulis ward, it came as a real shock and not sure its really sunk in yet, she was an amazing girl and was only 18! far too young its so shit! my heart goes out to all her family, its her funeral tomorrow so will be going to say goodbye! kelly was a proper fighter, and loved her attitude, didnt take any crap from anyone! definatly on the same level as me, just wanted to be treated normal!

miss u chick! breathe easy now rip Kelly Arnold xxx

love love

3,776 hours, 5 months 5 days on transplant list x



Time for a Change

Im in an ultimate thinking mode at the moment, so what better way for me to remember everything im thinking about than to write about it on here! :)

On my mind constantly at the moment is this new drug, its all i keep thinking about even to the point of having serious thoughts about doubting if i want a transplant now....how would i feel if i got the call now?
iv been on the list 4 months and 21 days without a call, i can see myself how my body has dipped since being on the list, and felt at times that i just preyed and preyed my phone would call and it would be harefield!

Now i feel all confused about transplant,  almost like mentally im telling myself im too well to need one, when thats not the case at all, and i no deep down if i got the call and the go ahead i would never refuse it, what will be will be... but reading up about this new Kalydeco drug, some of the results are amazing, even with people who dont have the gene type G551D that have taken it are seeing some improvements, which is so amazing....unless you have or know someone close to you that has cf you will never understand quite how much of a break through this drug is!

Like iv always said im realistic too, almost all the people i have read up about on this drug have started it with at LEAST 40% lung function which i havent been since corrrr maybe young teens cant remember so long ago and obviously im only sitting at 15% now which dips to 12% when im not feeling great.
so i havent seen any evidence of people with as low lung function as me.

so that reason alone this drug could still be amazing and will provent me from dipping any further which is great it will maintain me for whilst im waiting for transplant.

btw this is a little screen shot of an app my mum found, i didnt understand at first but on the left side is what a normal person is, and on the right side is one of my gene types the G551D, it basically shows that iv got all the right bits but my "gate" bit as they call it doesnt open which is why you get more muscus affecting and blocking around my body causing infection and damage etc...i hope im getting this right hahaha and this new drug basically opens the gate :)

back to the drug, altho i havent seen about anyone with as low lung function as me, i have heard that in America it has taken 3 people OFF the transplant list??

so i cant help but think in my head that its going to be and do so much more! and i feel like i need to do everything and ANYTHING i can to help with this...

after reading a few americans blogs iv noticed one of the main things they do as part of there treatment is exercise!!

well just mention the word exercise to me and you might as well carry on with a joke- me and exercise dont have any sort of relationship....

growing up i used my illness as an excuse to the PE teachers at school, telling them the hospital said i couldnt do it, it worked like a charm but infact exercise is probably just as good as taking some of my treatments!! gotta get them lungs working hard!!
obviously when you have chest infections or feeling run down its impossible to do.

im babbling on but basically im going to speak to my physio this week about what exercise i can do safely so my heart doesnt go crazy on me, just resting it goes up to 140 without having an infection lol

also eating...i struggle so much with sickness sometimes, and its all about getting calroies and fat in my diet i need at least 3000-4000 calories a day....everyone prob thinks wow thats great, for me it feels like torture!

so whenever i eat because my appetite is so low i just get fatty stuff in, but i need to change this cause this prob isnt helping with sickness too, need to get some healthy stuff in my life aswell as fat, i love fruit and veg yet i dont think im havign enough of it!

all these things along with this new tablet whenever the plan is to start it would make the biggest difference in my life ...i hope. its my mission for my self and a challenge to do this.

need to take control of my life, i feel like iv almost been given a second chance, a little wake up call with things at the moment. and also hearing about nicola has really upset, she so deserved to have the chance im getting, i feel so guilty in that sence and its really scared me, like i said before i forget how fragile my lungs must be.

everything else in my life is great, a new home to move into when i get out of here, iv got so many people around me who care, love and do so much for me!

i truely believe life is what you make it, even when things are shit you can make a bad experience into a good one with the right mind set!!

and also would like to add....

the weekend cleaner is lazy and shit!! i doubt she even cleans the bathroom, i bet she just sits in there, bangs about to make it sound like shes doing stuff.

also as its sunday just had the most AWKWARD moment, they have a little chapel service on the ward below and they get these bible bashers who come round to ask us to go down etc but recently they start little convos asking how you are etc, which dont get me wrong i no im sounding like a complete bitch but at least get someone who nos how to run convos....he didnt wana ask how i am and hows my treatment going, he looked so scared coming to talk, he wasn't confident about coming into my room let alone speaking and asking what im up to on my laptop! imagine if i had just told him everything iv just babbled on about! haha

bless him!

the wards pretty dead, im opposite a bay so can here all these newbie asthma patients talking abosulte rubbish to each other and dont even get me started on missy next door who has her own room, has asthma but bad asthma, cant walk shes so fat, constantly on oxygen has like an niv machine at night to breathe has to get help onto her motorised scooter thing and you no where she goes when she gets on it......

to the lift and down for a fag!! SHES ON BLOODY OXYGEN!! proper annoys me!!

anyway thats whats going on in sprogs head today! haha

my balloon from miss miller and i she got me a little me to you one too :)

lil tweet off ricky from the only way is essex..

little highlight to my day yday...told him to come visit me in hospital as he was in london lol

Lee thinks im an absolute Loser haha i reckon hes Jel! lol ;)

as you may have seen in my last blog, can everyone donate to nics page on the side of my links all money goes to the ward who looked after her! 

thats all love love

3,433 hours on transplant list

Sad times...rip nic x

Well to be honest i wasnt really up for blogging at the moment, but something is telling me that i need to share my thoughts with everyone tonight, and to get everything off my chest for my own good!

After having some amazing news about the new kalydeco drug that im going to be starting in the next few weeks, i cant help but feel guilty about it.

Since then iv had some really sad news about a girl id been chatting to this past few weeks, she was like myself, has cystic fibrosis, heading for transplant just getting the all the go ahead to get onto the list!
i felt like i had alot in common with Nic, esp when it came to wearing her oxygen in public! she started a blog which you can see here by clicking on Nicolas blog! she didnt seem to make a fuss over her illness, just wanted to be treated as a normal person and just got on with things, without making the drama like most people do! proper down to earth girl and proper laugh too!

its really has come as a shock to myself but also iv heard it has for her family too. i knew she was in hospital at the moment as she had a bad lung collapse last week, and needed two drains in to help with it, but in hardcore nic style she was down the pub when it happened and even drove home and then got an ambulance to hospital!! just shows the type of person she was, a proper fighter, iv experianced a lung collapse before and by the sounds of it mine was nothing compared but omg how she managed to drive home is beyond me!!
all seemed to be going well as could be, her lung had come back up and she'd had one of her drains taken out, but sadly she caught a virus and things happened so quick and sadly she passed away yesterday i think.

i always promised myself i wouldnt get attached to people as for my own selfish reasons its so hard to handle when you hear of storys like this, but the problem with having CF is people like nic and myself can come accross as being so normal and as well as we can be, and you grow bonds and friendships with people without realising how unwell there actually are, we talk about it but its almost like your telling a story instead of actually telling your life if that makes any sence... but sadly it only takes one bad virus/ infection and thats it, we forget how fragile our bodys are and how much damage has been done already to our lil lungs, you always want to be positive about life, and dont get me wrong i will never not be that way but.....

things have really hit home for me, and now thats another beautiful young life lost to such a shit horrible illness!!

im so gutted she didnt get her chance to get her life back, we both talked about wanting to go on holidays again with out mates and go out clubbing etc..... she will always be in my thoughts and im never gna stop fighting if anything i feel like im fighting for her aswell now!

thats all...

R.I.P Angel xxx

Nicola Johnson please donate and in memory for nicola x

love love

3,369 hours on transplant list, 4 months 18 days x

NIV, Sickness and Kalydeco talk!! Gene Therapy!! :)

Well had a crazy few days!!

Firstly i tried the NIV machine, have to say i no its not for fashion purpose but OMG it is the most unattractive thing EVER!! what a catch il be at night time!! been debating weather to put a piccy up but thought fuck it, i want my blog to be as real as poss even if i do look like a complete and utter mong!!- dont really care what people think anymore ha!!

heres the mong head :) ^

Now about the medical side of things.

At first i took quite well to it, the head thing as you can see straps around my head, its not the most comfortable thing in the world, and the actually bit where the air and oxygen goes into is where the nose bit is!
decided to go for just a nose mask as i think i breath through my nose when im asleep!

first night i tried it i managed to get to sleep for an hour i think straight but when i woke up i had to take it off, my lungs were aching so much and at first felt like i couldnt breathe, could not stop coughing, it felt like i had literally done physio constantly on the bird machine for ages, felt alot longer than an hour!
so decided that was enough for that night and went back to sleep without it.

since then iv been a bit put off by it, i need to man up as there quite keen for me to use it, but it took a good day for that pain in my chest to go, it was a weird pain it just felt like my lungs had done a full on work out not as if i had an infection kind of pain, prob the most my lungs have breathed in ages!

i suppose its like someone who always goes to the gym.....if they were to stop for a long time like a few months, then decided to go for an hour one evening and do a full on work out like they would before they would be in alot of pain...

but the only way to get past it is to carry on going to the gym and build it back up again, so thats what im going to do with this NIV machine, im not giving up, just going to use it little and often to build me up until i can get use to using it all the time at night!

My sickness has been the devil to me this admission! my cyclyzine iv was taken away from me on friday after seeing my consultant, she absolutely hates me being on it, and she changed it to a slow infusion of levomepromazine, so had to have a tiny needle in my stomach chub, about the only fat on my body lol

had this needle put in friday night, didnt really feel much of a benefit from it but gave it ago, although woke up saturday late morning and the needle had fallen out in my sleep, so couldnt be bothered to have it put back in again, so just sticking this sickness stuff out as there not giving me anything else to help!

Now onto the good news!

like i said i saw my consultant on friday afternoon, and before she left she started telling me about this drug there going to start me on as long as i agree obviously.

at first when she was telling me about it i got completely confussed with numbers she was throwign at me it was my gene type etc and the name of it and what this tablet does etc i was complete confused thank god my mum was there it was a complete info overload for me lil brain!!

but basically i kinda understand now!

there was alot of stuff in the news about "gene therapy" not long ago for people with cystic fibrosis, i didnt really take much notice of it as i knew it wouldnt be any use for someone like me, i thought i was way pass the point of "saving" if you like lol but thought it was amazing for younger people with cf, they will have a much longer healthier life!....

well turns out i was wrong!!

 the drug is called Kalydeco.

and its only for people with CF that have the gene type G551D which luckily enough i do! :)

its not licenced in the uk yet, but have been told by my dr that they have gone to the company and whoever they have to, to get authroised or whatever but have asked if i can have it on compasionate grounds as my health is so bad now!!

theres only 6 patients out of 700 at my hospital that will be having it, so i do feel very lucky!!

and when my dr was telling me about it and how great the studies have showed the first thing i said to her was could it get me off the transplant list???

she said lets not jump ahead of ourselfs as it wont undo damage that has already been caused in my lungs but it means that it could/will hopefully stop me from getting any worse so it will keep me well and stable whilst waiting for my transplant call....

that alone i am happy with if it means i can have some sort of livable quality of life back...

but im aiming and wishing for so so so much more!! i want it to be able to get me off the transplant list, i want to be well enough to be able to go on nights out with my girlys, i wanna be able to go on holiday with lee and family and get a mega tan and not have to rely on oxygen and wheelchair i no this is stuff this is more realistic post transplant (not the tannign part) but they say this drug is closest thing to a cure!!

you never no im thinking positively even if its wishful thinking!!

im so lucky to be given this chance, so fingers crossed its works....and apprantly its costs around 100k a year per person whos on it!!- see im not a cheap bird ;) lol

heres a bit of info i found off a website about the drug.

How does Kalydeco work?

In people with the G551D mutation of CF ages 6 and older, Kalydeco helps improve the function of a defective protein, called CFTR.

In people with this mutation, the defective protein moves to the right place at the surface of the cell but does not function correctly. Instead, it acts like a locked gate, preventing the proper flow of salt and fluids in and out of the cell.

Kalydeco helps unlock that gate and restore the function of the CFTR protein, allowing a proper flow of salt and fluids on the surface of the lungs. This helps to thin the thick, sticky mucus caused by CF that builds up in the lungs.

Kalydeco marks a breakthrough in CF treatment because it is the first drug to address the underlying cause of cystic fibrosis. All other therapies available address the symptoms of the disease, not the underlying cause.

oh and another great thing about it is....its only a tablet you take in the morning and evening!! sweet!!

so hopefully il find out next week more about this and keep everyone inform! as its not licenced in uk yet i have to sign consent forms with my dr so i understand etc why im taking it bla bla bla

other than that i finally got my ng tube down today and weights only 37.2kg so not as bad as i thought it was going to be! :)

defo happy sprog at the moment!! my life seems to finally be falling into place, bungelow is coming along amazingly thanks to my lee!! hes been a proper star at the mo! and mum and dad have cleared out my flat and all three of them have moved all my stuff over to the bungelow so ready for tuesday when i completely have to be out of the flat, weird to think after 3 and half years i wont be going back there!! but so exciting at the same time!!

and im just chilling in hospital why they all run around mad after me, true george style! ;)

thats all

love love

3,266 hours on transplant list- 4 months , 14 days. x



18 days too soon!!

18 days thats all i lasted!

i was admitted back onto Foulis ward at the Brompton again on monday... sucks!
dont get me wrong my body needed ivs, my chest has been rubbish, my weights not great, pretty much the usually shizzle but i expected to last a bit longer!

last week i had spoken to cf nurse and they told me to come up to lind ward to see someone and get started on home ivs on monday but over the weekend i felt so weak and the thought of doing home ivs myself just didnt feel up to it, plus its not pratical at the moment as im moving this week so trying to get everything out of the flat, wouldnt be any good having a drugs fridge and more medicines and boxes delivered!

plus im just in the way at the moment at home, im no use to anyone, i cant help with anything cause im feeling so rubbish and its stopping mum from doing things to help me get sorted with the move cause shes constantly looking after me, so hotel brompton seemed like the safest and most pratical idea at the moment and instead of leaving the infection to get worse nip it in the bud now!

however once here being pratical seemed like a stupid idea! i hate being cooped up in this place! its shit!! although a few good thing about this admission is biancas here to keep me company and good old stuart aswell, i have a bath in my bathroom so happy days for sproggy!! i can chillax in the bath, and yet again i have a tiny room but huge bathroom haha makes me chuckle!

im in room 9 this time right next to nurses desk! weird being in this room, last time i was in this room was may 2010 i was so unwell and missed my holiday to turkey with my family so memories of this room arent great, but its a great room to have a good nose at people, you always know whats going on! although you dont get much time to pretend your asleep if you dont want to see certain people! lol

sickness has hit me bad! i dont even know why, it doesnt make sence im only on cef and tobi this time and i always have ondansatron iv but even thats not working at the mo, they have uped that and giving me iv cyclizine which i normaly dont ask for cause can become quite addictive but ondansatron is doing nothing for me and cyclizine takes the sickness away straight away and i dont feel the erge to want it even if i dont need it! so not addicted yet! lol

the only problem with these with any of the anti sickness stuff i take is most of the side effects are tiredness so iv been pretty zoned out and asleep for the last few days havent been able to function at all, even looking at my phone seemed impossible at times let alone taking etc! its just crap!

they wanted to start me on aminophylline drip but that makes me feel so sick and dont wanna make things worse so tried the tablet, but i cant handle that either and gives me the worse stomach cramps!

so they can jog on with that!! lol

woke up to lovely blood gases this morning! the woman was rubbish and she had the right hump, she wasnt doing it right and i asked her if she had done it before and she got all bitchy and told me she had done loads of them, but she was digging around in my wrist for ages the bitch! then she took it out and asked to go in my other wrist and told her no cause didnt want two bruised wrists and my right hand which she had already tried was my best so with attitude she tried again and at one point i felt she got it then she moved again and i told her that she had it, then she carried on digging and i felt she got it again and i said u got it pull back, so she pulled back and blood did come back, then off she went with the hump.....she never came back so i guess i was right!! the moody cow!!

for anyone that doesnt no what blood gases are, its basically a blood test they have to feel for the pulse instead of going into a normal vein you can see! its quite painful if its done right! lol

anyways so im still early days of ivs think im supposed to be trying the NIV today, so no doubt my next blog will be about that!

well once again i will be ending my blog about Mr Mickey Park! as yes yet he has done another Half Marathon!!

just a week after doing the london marathon and still all sore achey and in pain mickey took part in the Bracknell Half Marathon!! hes a proper trooper!!


heres a little piccy

 heres all his medals of achievement

if you didnt sponsor him shame on you!!!, mickey has gone above and beyond for fundraising for cystic fibrosis the last few months!! thanks so much mate, time to relax now!!

thats all for now

love love

3,190 hours on transplant list (4 months 10 days)