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
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
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