Wednesday, 30 January 2013

Blog from bed!

Going to try keep up to date regularly with this blog now!

Sorry about the last blog had a lot of ranting to get off my chest!

I can't really put a finger on how I'm feeling at the moment, I'm like a bloody yoyo, up and down. Sunday i was a mess, had this horrible Muzzy head that wouldn't shift, lungs felt like they were drowning me and just felt so tight...yet yesterday I was buzzing and had such a good day, until I came home that evening and the dreaded headache returned, felt quite feverish, hot then cold, goosebumps would come and go, just couldn't settle. Had a restless nights sleep, constantly coughing, struggling to breathe, back to going to bed every night with oxygen, have done now since end of November, just all getting to me now, clearly kalydeco isn't a complete cure for me which I knew it wouldn't be but these little moments just bring me back to how it was waiting for my transplant call...

I think I have an infection brewing cause its unlike me to get feverish without there being more going on, also at times feeling sick, which only happened pre kalydeco.

So after missing last appointment at Brompton due to snow, I've emailed them today to organise going up to clinic next week to see them plus need a port flush as that's over due lol.

Another thing that's been bothering me at the moment which I need to tell the doctors is my eyesight.
My eyesight has always been perfect, these good old big eyes have been in good working order all my life but just before Christmas and esp a lot recently I have been squinting a lot whilst watching tv, or looking at something in distance, really starting to notice it more and more and my vision sometimes goes blurry and I can't focus on things, really bothers me, this could also be why I'm getting headaches or a mixture.

A thought crossed my mind if it could be kalydeco doing it, I doubt it but there's always alarm bells going off in my head with this drug sometimes...
They say when things are too good to be true they normally are...and it's always baffled me that there aren't really any side effects to kalydeco.
This is the paranoid part of my brain kicking in. But think its something to mention to the hospital just incase and going to arrange to get my eyes tested next week as I haven't had one since I was a kid anyways!

Also I'm very jel of the people getting there kalydeco delivered to there front door as I have to travel up to the hospital every 4 weeks for a poxy supply!!

Can't be too jel I suppose, I have been on K longer than everyone else and should appreciate that!

Anyways off to sleep now!
Night all
Mucho loveo


Friday, 25 January 2013

Reality of Organ Donation!!


whats on my mind.............

Well last time i blogged i spoke about my dear friend Paul, who's funeral i was due to attend.
As i said before how inspirational this man was too me, well meeting his beautiful family and friends, i can see what an amazing support network he had, and as they say behind every great man theres a great woman and for Paul's wife Sarah this couldn't more true! without sounding weird it was one of the most amazing and uplifting funerals i had ever been too. i felt wrong to be upset, it most certainly was about celebrating his life!! the day just showed how great and kind person Paul was because the amount of people there to show there respect was incredible! i don't think ive ever been in the room with so many people! It felt comforting to me so i cant even imagine how it made his family feel, Paul was defiantly there running the show and keeping everyone going!!
RIP Paul xxx

Theres Something that has been playing on my mind for a while that which i want to share my opinion on!

so a few weeks ago i was reading a friend of mines blog that her fiance had written to update everyone as she was so very ill and couldn't do it herself, and i came across some comments that people or shall i say person had left after reading the entry which has really annoyed me!!

Organ Donation is a tough enough subject for people who are not living a life surrounded by friends or personal experience of needing organs, so every negative comment i see about it i cant help but get angry and feel the need to pipe up!!

so let me show you the comments first...

these comments infuriate me!!

lets take organ donation out of equation for a second!!...as sad as it is unfortunately people die every day for many different reasons, its nothing that can be prevented its a fact of life..

by saying that "we hope the call comes soon" that is noway implying that we are asking for someone to die, because normal healthy people don't just choose to become a organ donor and then die to give up there organs whilst there alive....no!! being an organ donor means that when your alive and healthy you make a choice, your just saying yes to join the register so if anything was to happen or you die naturally of age or for any reason if they can donate any organs that are healthy enough to save someone else then that's what your agreeing too! most organs come from people that have had head injury's for which case doesn't matter how healthy your organs are if you have a serious head injury and are classed as "brain dead" then you will not survive...

this is quite harsh reality but i want people to understand organ donation! sometimes you have to say it in black and white to get the message across!

so for this anonymous person to say that it is insensitive i think they are clearly not educated enough to understand or are living in a bubble!! arghhhhhhh
and from personal experience being on the transplant list for 7 months waiting and hoping and wishing that call would come to save me from a life of struggle, never once did i wish death on anyone, in fact that has to be one of the hardest parts to deal with, knowing that some family would be going through the worst time of there life!!

also been watching hollyoaks at the moment and one of the girls is waiting for a liver and another girl said to her that now "someone has to die" to save her...i know this is true but the way it was put across made it sound very negative and because the girl tried to kill herself and now has liver failure because of this its just a sensitive issue and makes it sound like people who need organs bring it on themselves WHICH IS NOT THE CASE!!!...oh I'm going on now but arghhhhh annoyed.com!!!

anyways rant over!!

so my life, has been major up and down at the moment (chest wise), this cold weather is quite frankly pissing me off!! no good on the old lungers! today i popped out for half hour and literally struggled to breathe...stupidly didn't bring oxygen, so as soon as i walked through the front door that went straight on...

well after killing my dog (not literally) lol he had ripped up lees files with all his paperwork in it! haha hes such a good dog normally but today i think he was trying to prove a point as Ive not taken him out in a few days, hes going on "nice dog" strike!

after dealing with that 5 Min's on oxygen i was back to myself again.

recently done a video for vertex the company that made Kalydeco. just a little video to show how kalydeco has worked for me and the difference before and after starting it, something different to do. would put the link up to it but I'm not sure I'm aloud to post it anywhere as its just for internal use for there company and to educate doctors for Kalydeco.

that's about all for now looking forward to the year ahead, as I'm going to be a bridesmaid for my beautiful cousin sally!! and many other adventures..very excited!!

oh and Rylan just  won Celeb Big Bro whoooooooooop!!

mucho loveo



Monday, 7 January 2013

Catch Up and Rip :(

I seem to start every blog these days with the same thing...i havent blogged in a while bla bla

so last time i blogged i was in hospital, you'll be happy to know i left there as planned the day before my harefield appointment. unfortunately to my disapointment my lung function didnt increase, infact it was 1% lower than i was when admitted which i literally dont understand one bit... i didnt care to much i felt great!

so there i was next day waking up for my harefield appointment, firstly i was an hour late waking up which mum was really pleased about...not! haha oh and to make matters worse it was snowing so typically every moron on the roads panics and decides to drive at about 10mph which made me even later picking mum up, then we had to get over to harefield avoiding the m25 in rush hour...it started off as one of those days you just shouldhave stayed in bed! lol anyways there wasnt much to worry about we werent actually late, we just didnt have time to get breakfast first butttt because i was first one at clinic and i didnt have to have an echo done after signing in and having half my bodies blood taken from me and weight and sats done etc there actually was a chance to get some breakfast...full english!! harefield appointment felt weird this time round because i knew i wasnt there to tell them how desprate i wanted lungs..quite the opposite so the day dragged like a bitch! lol

i had my lung function done again and  obviously my lungs just wanted to piss me off as my lung function dropped another 1% so was down to 22% but to be fair that was better on there records as my last LF was 16% there just before i started Kalydeco back in june!

we left harefield at lunch time and headed over to my aunties as she only lives about 10 mins away so had a nice relaxing lunch chit chat sandwich on comfy sofa! was much better than the hard seats in the waiting area in clinic plus there heating was on so high we were pratically falling asleep!

so after lunch headed back and this was the longest part of the day, we waited about 2-3 hours till we saw dr carby. once i saw him though it was pretty quick and straight forward, he could see straight awya as i was walking into his room instead of being wheeled in or on oxygen, i explained how i felt about not wanting to go back on the list etc yet and my improvements, as much as he was dlighted for me and could see the change he was also very hesitant aswell and said i was still "ill enough" to need a transplant but if my quality of life had improved as much and i felt i wasnt ready for a tx yet then he was happy for me to stay off but wants to see me in 6 months and he would have me reactivated at any time, but to also be in contact if any thing changes or worsens, and to make me aware that i still have a very low lung function and im at risk with every infection. which i suppose i forget- my glass is always half full ;) lol it did make me think about it and question weather my choice to stay off the list was the right thing to do, as much as this drug has worked wonders, i still expected so  much more, but saying that ive improved so much from what i had become!! the doctors always said it would "stablise me" and i feel like it has made me alot better and lets say in a safer way than i was before but now i feel like things are now stablised, i am happy though because i still have indepence.  xmas is a hard time to judge as bugs are flying around everywhere and lets face it im not superhuman and i do still have cystic fibrosis and this time last year was potentially dying haha so yeah things are still 100% better...bring on the summer!

i was well and truely ba humbug this year!! i dunno why im not normally like this...i think its lack of money, and i want my house to look nice and get it finished so dont want to spend money on crappy presents that most people dont want anyways... haha plus its so stressfull trying to think what each person wants.. and seeing others stress over it...its bollocks id rather just be around my family and loved ones and enjoy xmas for the real reasons not presents, xmas is for kids and the excitement!...i may feel differently next year though haha

i spent the entire xmas feeling quite unwell, but it wasnt a typical cf unwell or chest infection, i had a normal cold like a normal person...i couldnt handle it haha my throat killed, my nose was blocked, my ears blocked everyting washorrible chest didnt feel that great aswell, was back to oxygen and wheelchair for me! the thing i was worried about the most was it turning into a chest infection...and touch wood im over it all now and so far no chets infection!

new year i decided i still didnt feel 100% to go out raving mad and lets face it, its a complate rip off, bars and clubs charge you tripple and i just wanted to have a good night....ended up being more drunk at home than i would have down going out but enjoyed it with my hubby and bestie so was a good one!! haha

now onto the crap news!
its hard for me to write this as i dont really want to believe its real...
back in may after the sad news about my friend kelly dying i had the most amazing news same day that my friend paul had got his transplant! it was such mixed emotions after hearing about kelly but was aboslutely made up for paul and his family, he has two beautiful kids and lovely wife and he had been on the tx list for about a year and half. he was one of those guys that was ALWAYS positive no matter what i know people say it about people like oh yeah there positive but he really was, he never went in a wheelchair he refused to give in, he would have is oxygen on his back and walked everywhere!! and always had a big smile on his face, we always said that when we both got our transplants and recovered we would train for a marathon, he was very sporty before he got so unwell so he couldnt wait to get back into it all, he said we could do a half marathon as ive always been lazy and might be a bit much for me to do first but we said we would do it together for charity!!

so when he got his call i was the happiest girl in the world...i wanted him to get them lungs so much.
dont really want to go into detail with things but unfortunately it didnt work as well as we had hoped there were alot of complications after and and sadly he passed away before xmas.
i hadnt heard from him since before his call as he wasnt able to get onto facebook which is mainly how we were in contact unless in hospital together then i would see him. i was in touch with a family member of his on and off and wasnt fully aware of the situation...which i now know was because paul wanted to protect me...even after everything he was going through he still had time to care about others!! he was one of the sweetest guys ever met, the kindest man i knew! very real person.
its hard to loose people as it is, but he had a place in my heart paul, i dont think ive cried this much in a long time, was such a lovely guy anyone that knew him or knows him will understand how im feeling, and it all becomes very real when stuff like this happens, selfish reasons its a bit of a reality check too! CF is such a cruel illness!
have his funeral this thursday, and im dreading it, makes it all real then and when i see his family members i know il just break down, but i cant not go, i wouldnt feel right not being there!

hopefully next week will be a better one.