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.
1,396 hours on the transplant list!!