Delayed and back in Hospital!

Well this blog was supposed to be the most exciting blog yet....if things had gone to plan! Unfortunately nothing ever goes smoothly and I haven't started Kalydeco yet, hints why it's taken me forever to blog, I was pretty pissed off to be fair and it was absolutely no1s fault other than myself!

Basicallyyyyyyyy.......

As planned I went to clinic on Friday afternoon and was sooooo excited! Driving up to the hospital was one of the best journeys I think I've ever done there just for the pure fact I was minutes from getting it...well so I thought!
So I started seeing everyone etc before my consultant came in I was given all the details to read through so I understood exactly what it was, why I was having it and what I had to be careful of etc and the risks and side effects....which made me giggle really because the side effects are pretty much the symptoms of cf coughing etc haha but hey Ho has to be put down.
Also what I cannot take whilst on the drug like grapefruit juice and herbal remedies which I don't use anyways so was all good and very interesting.

Then finally my dr came in and went over it to make sure I had read and understood exactly what I was signing and agreeing too and then last minute he double checked I wasn't taking any meds that were on the list that you cannot take whilst on kalydeco
One of which was a tablet called apprepitant, but he said its ok you only take that on ivs and I haven't been on ivs for at least 6 weeks and needs to be out of my system for at least two weeks before starting kalydeco so he was like its all fine....

Well it wasn't my heart sank and could feel my eyes filling up....I had been taking this tablet and not telling them, it helps so much with my sickness and they don't want me normally to take it because then I have nothing to fall back on when I'm on ivs....so I had to tell him I was taking it, then he asked when was my last dose and my stomach turned...it was that morning!

I didn't cry thank god! But I felt GUTTED, he went to check to see if there was a way around it or weather I had to wait or not but there was no exception.

They couldn't risk me starting the kalydeco with apprepitant still in my system because if I reacted then they wouldn't know if it was the kalydeco or the combination!

There was nothing I could say or do and I couldn't blame him because I didn't tell them, he was just as gutted as I was!

Soooooo I still signed everything and the new start date is the friday 13th July....it's my LUCKY day!

(I told my two sisters I would be starting it that day and they said nooo that's unlucky day it won't work now...little rats) hahaha

I'm not superstitions at all thank god!

So yeah that's been a bit crap and annoying but bring on the 13th

So before I left clinic, my dr knew I was starting to decline again and asked me to start orals, but there so pointless they don't help me and I didn't wanna hang around in the hospital for any drug other than kalydeco so I dismissed the idea and said il contact them after the weekend if I got any worse

Which brings me to why I'm back in hospital! I had a bad weekend, oxygen constantly, could barely breathe at times felt like I was suffocating, no energy and now I'm off apprepitant big time sickness, it was all too much to handle I was trying to kid myself I was fine but I wasn't so mum and lee said I should go in, but the thought of leaving my beautiful little home and spending yet ANOTHER birthday in hospital killed me but the weathers rubbish and I want to be at my best starting kalydeco so I stopped being stubborn and called the hospital and went to clinic yesterday and was admitted, lung function is 14% crp is 60 which is not bad at all for me I think sats are hovering between 88-92 off oxygen so all in all not a terrible infection :-) but defo NOT taking appretitant and I keep questioning every drug to make sure nothing's going to prevent me starting kalydeco on the 13th!

Sucks to be in for my birthday on Sunday but I'm getting my pup in just over 2 weeks so need to be well and out to look after him! The only thing keeping me positive about being in here! Lol

But I have a plan to get to the gym everyday, eat loads, get these lungs as good as I can, start kalydeco whilst I'm in here and go home a different fat happy Sprog! ;)


Also some more gutting news, My hospital the royal brompton children's ward will be closing! It's so so wrong, don't understand it all but I know sooooo much has been done to prevent this! Just feels like the stupid country is against anything to do with cf at the moment! I know it's mainly been about the heart children's part on the news etc but thats where all the cf kids go, that's where I use to go and it's soooo amazing all the staff and now that's shutting I can't help thinking what's going to happen to the adult ward? :-( and to add to this I know I'm very lucky gettin this new drug but it's looking like the cf community that have the same gene won't be as lucky as this drug is so expensive!? How can they spend so much pointless money on the olympics yet they cut back on treating and helping the cf lot? Arghhh so messed up!!

Rant over!! :-)

More count downs to add lol
3 days till I'm 22!
17 days till I get mason :)
203 hours till I get kalydeco
And been on transplant list for 4,688 hours, 6 months 12 days

Harefield 6 month transplant clinic

So today started at 6am, well it should have started then, my bloody annoying, noisy alarm started going off and it felt like someone was stabbing my ears, but typical me instead of jumping out of bed to get ready...nah I wacked the snooze button...this carried on until about 7.10 then I decided to jump out of bed in a mad rush to run a bath which clearly didn't wanna fill up quickly by that time the lung attack..yeah my lungs had realised I was awake and the crazy coughing fits began...just what you need when ya in a rush hahahaFinally left the house about 7.45 pretty good considering! Didn't get a chance to have anything to eat though, didn't care the plan was to grab some breakie at harefield...I quite like there canteen food ESP breakfast!

Jumped on the a3 solid traffic...just what I needed...then m25 was at a stand still...highlight to my morning, to be fair once I was on it, it started moving a lot quicker!

Got to mums, made her drive, had to drop my orange sister off at school lol (she's not actually orange, just chooses to paint herself that colour for school ha!)

Then off we went to harefield, after the m25 being crazy busy we decided to go on the back roads, it's was about 8.40 by then and harefield on a good day only takes bout 20 mins from there and we didn't need to be there till 10 plenty of time...so we thought!!

Well nope obviously it was just one of those days we took every wrong turning, sat nav decided to freeze and couldn't get location, both mine and my mums iPhone had "NO SERVICE" just perfect..we didn't get to the hospital until 10.15 ish and no disabled spaces haha

So no breakfast and cause we was late we were last ones to be seen for everything.
Bloods
X-ray
Echo
ECG
Lung Function
Was soooo boring waiting around, I member being terrified the last time I was there. This time was like a whole new place for me, didn't feel vulnerable or intimidated or scared and nervous, just felt my usual self plus agged and hungry and tired and very uncomfortable! Lol

I almost fell asleep having my echo tests done, that dark room with the jelly stuff on my chest and sound of my heart beat...quite relaxing, well it is until they dig the stick jelly thing into a rib! Cor that hurts and then they dig about more and twist it!! That part woke me up!

Quite a good looking guy did my X-ray which was a bit embarrassing when I had to take my bra off keep my little vest top on but my boobs droop down to my ankles! ......(ok slightly ott lol)

ECG was just awkward, the guy was clearly gay and repulsed at the sight of me in just a bra! And didn't make any eye contact, or any contact for that matter other than sticking probe things on me!

Lung function was down to 15% which annoyed me a bit as it was 20% at clinic on Tuesday last week :-(

So had all tests in morning then went off to have lunch and come back around 1.30 to see dr carby.

Well we got back and waited..and waited..and waited! Was beyond boring!
I did learn that a baby goat is called a kid not just a baby goat! Oh and that a donkey isn't a type of horse! And Dutch isn't French! Lol cheers mum!

Was so bored even started taking pics of clinic!

Finally was called in after everyone else at 3.40

Didn't see dr carby though was a woman, couldn't quite understand everything she was saying felt rude but my hearing is crap! But she said everything's still pretty stable from when I was first listed but was worried about my weight as it was 37.3kg and a bit concerned about my heart! Apprantly my echo had showed that the right side of my heart was slightly weak probably due to all infections and how bad my lungs are would start putting pressure on my heart, doesn't mean I need a new heart or anything thank god it's minor nothing to worry just need to do losts of exercise and keep fit etc!

I asked about holiday and could I come off list to go away, which she said was totally fine :-)

Then obviously I mentioned Kalydevo and that I would be starting Friday
She then said she doesn't know about it and went to speak to dr carby...5 mins later she returns also with dr carby :-) forgot how big he was...he looks like a rugby player!

He is quite possibly one of the nicest drs Iv ever met! Firstly he mentioned how in last 6 months Iv constantly been in hospital and maybe it's time to start considering the lobe transplant do things don't get any worse...alarm bells went off in my head wowww

I said I wanted that to be a last resort even though there figured show they are just as good as a normal transplant.

So I said about kalydeco and that I would be starting and would I be able to get off transplant list or put it off etc. he basically said you need to live as long and as normal and good quality life with my lungs that I can, so if things drug makes me feel amazing and I have a good quality of life back and I'm not wanting a transplant then I should in no way be forced to have one if it's not right at the time! He said he sees the other side and many do very well but some don't make it! He also said I know that the other side of things is that I might never get that call so coming off the list if I wasn't well enough too wouldn't be a good idea etc! It's just common seance really.

But Iv got to let them know how things go bad and good, before I mentioned the kalydeco he seemed pretty keen to get me of more of a priority on the list, so it's made me think they must have some sort of ranking etc....

But he said the second I may feel that I would refuse a call I need to call ASAP do I don't waste any time as once lungs become up from a donor time is precious and I can't muck them around, which I totally respect and understand!

All in all I feel good about today's appointment he's made me feel very positive and in control. He said even if I came off list it doesn't mean I couldn't go back on again when I felt I needed to which I was happy about.

He said he doesn't want people who don't need to be listed listed! Which is true, he's not going to make people go through such dramatic surgery if it's not right for them!

Anyways I'm babbling on now but I'm very happy about today and sooo excited for Brompton on Friday!

Love love
4,523 hours on transplant list 6 months 5 days

Some pics from clinic! Very bored! Lol

Happiest Girl in the WORLD!!!

I know i did a tiny pointless blog this morning but ive actually got a better reason to blog this evening!

yes yes yes i got that call iv been waiting for since i first found out i was getting it....nope not a transplant call something better.....KALYDECO!!!

i have to go to clinic this friday at 1.30 as its all been secured for me, ive got to go sign the paperwork and pick up my new amazing drug "blue-lighting" kalydeco!!

im beyond excited and after getting the call today i couldnt stop smiling and shaking! it was like all my birthdays and christmases had come at once!

so im making a plan now, seen as though i started feeling a bit rubbish last few days im going to start a little diary of how my chest really is now and exactly how im feeling to see the changes and differences, sounds pretty gay but some people might be interested and im pretty differcult to tell how i really am, if you ask how i am il tell you how im feeling that precise second, so weather or not iv been feeling crap all day if im feeling good for that split second then il make out iv been feeling great the whole day, and obviously thats not very useful if im trying to see if there is differences on this drug, so yeah thats the plan!!

hope i stick to it and i dont just bore the hell out of people reading hahaha

also i might let people into alot more than i usually do, il try not to be too discusting but i know people will want to know the ins and outs of everything ;)

anyways not really much more i can add health wise until friday...

gonna have to give my consulant a massive thanks for getting this before my birthday like i asked ;) whoop

watch this space powwwwwwwwwwwwwwwww!!!!!

oh yeah 6 month harefield appointment on wednesday too...

just under 4 weeks until we get puppy Mason home heres a little piccy of my baby boy!

love love

4,472 hours on transplant list
6 months 3 days

xx

Tiny morning blog!

Woke up thinking today was a good day until the sickness hit me! FML sickness has to be one of the worst things EVER I'd rather having a thousand chest pains than feel sick!!

Chest is starting to dip, I'm struggling more and more these last few days...arghh hate it hate it!! Need this new drug to hurry up I don't want to go back into hospital for ivs etc and want to be well for my birthday. Really hoping this is just a crap few days and il start feeling better again!

Going to go for a little shop and a sunbed to see if that helps me...looks like il be bringing my oxygen with me today though :-(

Love love

4,461 hours on transplant list
6 months 2 days x

so close yet so far!

I was hoping this blog would be full of exciting news and the beginning of a new start on Kalydeco.....not the case yet!!...but sooooooooo close to getting it now!

Had clinic on tuesday and all that was on my mind was this new drug, i just wanted everyone to hurry up and get out of the room so i could see the doctor!
I thought my lung function would have dropped a little bit as iv felt more chesty and tight the last few days, however i was suprising wrong!!- its up to 20% go me!! dunno whats going on at the moment but im not going to knock it!! highest its been for soooo long without the help of steriods and anything else. must be all this kalydeco talk! :) ovbiously i know 20% is low but jheeze better than it was when i was first listed for transplant! This time last year i was in hospital starting my 5 week admission full of countless xrays, blood gases/blood tests, bad sickness/low weight, ng tubes stuck down me, ct scans, a lung collapse, a chest drain and my 21st birthday stuck in hospital!! so if you compare it to that...im doing pretty bloody good! :)

i have harefield next week so they should be happy :)

also sats were 90-94% so all really good....the one thing that they could moan at me about was my bloody weight! lol had to give them something i suppose, even if i walked into clinic a proper fat knacker they would find soemthing to moan at me about! haha weight was 37.8kg...but to be fair i had a bit to drink saturday night with all my family and felt rubbish on sunday so barely ate so i blame that, prob body just catching up on me...i did explain this! lol

i got to see my consultant who iv not seen in agessss so was glad when he poped his head thru the door :) obviously we did the usual chit chat how i am etc bla bla i told him about not feeling too great on tobi after changing so he said theres no harm with me now staying on cayston which i was happy about!
then we spoke about when will i be starting my new drug. he said there still waiting for some people to sign the last bits off. its taking so long cause they want to make sure once i start it no1 is going to take it away from me. so hes hoping to hear in a couple of days and he said he dont wanna give me false hope but should be getting it in next couple of weeks. i asked if i needed to do any tests before hand and could i do them now so i wont hold anything up! but he said nope dont need to do any tests il just get a phonecall to go into clinic, sign all the paper work go thru what i have to agree to, like starting "the pill" part of vertex conditions of giving it to me etc,but yeah and i dont need to wait to have my first dose there i can just go home etc. so im just going to wait for that call now!! although if i dont hear in next few weeks i think il call up because i just want it now!!

i also told him that i had calmed down on my thought of coming off the transplant so he could tell everyone haha we talked about the effects the drug would have and he has told me not to expect to come off the transplant list as this drug is to help me maintain and stay stable, it will stop me from dipping anymore, as i could see where i was going from the past few months and it did scare me, plus the better i am when having a transplant the better the out come is.
i said there is a chance i could come off the list though you never know! and he said its very unlikely but you could prove me wrong, but carried on about about how it wont happen etc....

it just made me think back to last summer, he was the one who said theres no way i could do my NG tube myself and i would need a peg again....there was absolutely no way back then i was letting him be right so i proved him wrong and did everything and gave it everything i had in me to teach myself to do it and i did it!!
so when he said it wont take me off the transplant list etc it just wants me to prove him wrong!!- i could be wrong and dont want to believe in something that might not happen, but in my eyes its not impossible and i love to prove people wrong...so all im saying is watch this space ;)

something i feel very strongly about is although im very lucky to be getting this drug unfortunately its not the case for everyone that has the G551D gene......and it looks like its going to be a big fight for everyone to get it! so im going to do all i can to help those to fight so everyone can get it....

imagine if i had been given this drug when i was younger... i wouldnt be in this situation at 21 years old now waiting for some new lungs, and only a couple months ago planning my own funeral!!....I know this is heavy but its the reality, see where im coming from, sounds cheesy but the future doesnt need to be like this for kids growing up with cf now....with this drug they can pratically live as normal life as anyone else there age- doesnt seem right to let people suffer for no reason.

THIS DRUG IS LIFE CHANGING!!

please please can everyone sign this petition before it ends on my birthay 8th july needs as many signatures as possible!!

http://epetitions.direct.gov.uk/petitions/34753

Also another very important time of the year, well its important all year round but its transplant week on the 9th-15th July!! so if you havent already or you have get helping and lets get more people signed up for organ donation!!

its so important and really could affect you one day! your more likely to need and organ than you are to donate one!

with that in mind if you would take one then donate one and get signed up here...takes 2 mins!!

could save up to 9 lifes!

https://www.organdonation.nhs.uk/ukt/how_to_become_a_donor/registration/consent.asp?campaign=1160

4,371 5 months 30 days on the transplant list!

love love xxx

Back on it!! Organ donation!!

Wasnt going to blog until i had something interesting going on in my life, but in one of those "thinking modes" again this evening so as usual this tends to end up on here!

firstly i think i have lost sight of one of the reasons why i am doing this blog... i want to raise awareness mainly for organ donation and feel and know i havent done this in god nose how long, iv become quite selfish in that sense!! so im going to jump straight back on that now!! even if its doing my tiny bit by annoying people on facebook or doing the odd tweet now and then, at least its something and may get another 1 or 2 people signed up!!

cause either way whatever happens with me in the near future one day i will need a transplant so raising awareness should be one of my main priorities! and there are so many people out there waiting for transplants, not just cystic fibrosis people, organ donation can affect ANYONE one day, your more likely to need a transplant than donate your organs! so lets bare this in mind and sign up ;)

if your not signed up click on the pic on the side which will direct you to the organ donor register, or click on this link https://www.organdonation.nhs.uk/ukt/how_to_become_a_donor/registration/consent.asp?campaign=1160
or visit the Live Life Then Give Life website!! which is also an amazing charity so please donate to them too if you can spare some pennys http://www.lltgl.org.uk/page.cfm/Link=0/t=m/goSection=1

sprog is well and truely back in the game! im feeling as good as i can at the moment!

very positive about life! so need to use all this good energy and do something usefull with it!

Another thought, im pretty lucky im not feeling as unwell as i was last few months... been on transplant list for over 5 months now...and although i would NEVER admit it, i think i had started to give up a tiny bit, like i was just forcusing so much on getting new lungs....you cant be like that, its almost like you have to program your body to not "wait" for new lungs cause what happens if they never come? you have to live life as normal as your body will let you!

its really made me think these last few weeks like what was i doing, i literally became sooo unwell for me, could barely breath without my oxygen attached to my face, didnt walk anywhere or go anywhere without my wheelchair, i had not much quality of life to be honest!!....

i do think a big change for me has been my new home! its amazing that something so small could be bothering me without really thinking about it....i can honestly say now iv never been so happy in life, and with this new drug around the corner its all so exciting and without sounding morbid its really given me so much to live for!
i mean literally a few months ago i was planning my funeral with my mum and lee for worst case senareo but now i couldnt be further from thinking like that!!

il never give up now matter what happens...even if things didnt go to plan and i was on dealths door i dont think iv got it in me to give up!! my head is far too strong and stubborn for all that! :)

sorry gone a bit deep!!  but harsh reality and sadly there are others out there that arent coping as well as me and so desprately need a transplant, so i dont want this to be a despressing blog i just want it to be a bit of a reality check for anyone whos reading, i count myself very lucky at the moment, but iv lost alot of close people to me recently and heard of so many who have lost there lives!!

anyways all for now

love love

4,236 hours on list, 5 months 24 days.

This is a "can't sleep blog"

Bored of attempting to sleep, my body isn't agreeing tonight, even after taking my levomepromazine tablet which is an anti sickness that also sends me to sleep.

Been going over a few of my last blogs and I feel like im sounding proper rough, been swearing a lot do sorry about that. I'm not that bad in person! Although I do want to keep my blog very real! And seriously need to start using spell check and read over my blogs before I blog them! Haha

So not gonna lie although I still feel
So good for me at the moment I think I've become quite in denial about starting to "dip" again, I don't feel as great as I did a week ago.
Chest esp at night has become tighter, sat on my oxygen tonight properly for first time in a while, still sat there struggling untill lee said to me though!!

I suppose feeling really well is such an amazing feeling when you start getting bit rubbish you don't wanna believe it cause then it just leads to ivs, more hospitals visit or being stuck in that place for at least two weeks- cant be agged with that need some time out!!

I have the Brompton next week do see how i am then. Just wanna start the kalydeco now sooooo exciting and so hope it works to the absolute max!! Wanna prove everyone that doubted me about it and how it might not work much for me!!

One problem with feeling a lot better at the moment is and this is a massive fault of mine but I have no time or patients for
1. Moany people!
2. Obsessive people!
3. And people that crave attention!

I need to learn that not everyone is like me and people deal with things in there life in different ways!

Just get frustrated when people make things there life when they should be out enjoying life!

Bitching over now! Like I said its a fault of mine and Iv become very snappy and sensitive towards a lot of things recently which I hate! I have strong opinions So sorry to anyone who I may have upset!

Anyways we have a new addiction to peachtree family, his names bow but spelt beau! Mums new favourite child!! Haha mum got him for her bday!! he's a pic of my bathing him today x

That's all I best try get some sleep night xx

4,141 hours on transplant list
5 months 20 days

Xx

Sooooooo

Little blog update...

Health wise:- Last few days my chest had been a bit more ratterly, I changed onto my tobi neb month and felt like my chest started getting rubbish again, sats started dropping back into 80s and started getting chest pains, and reluctantly was made to use my oxygen by lee! freaked me out, im so use to feeling well when I had a few days of struggling again I hated it! So decided to go back onto my aztreonam neb again and now I'm feeling better, so gonna speak to drs about that, I know they like me changing them each month but if it's gna make me feel rubbish then no thanks.

Well since my last dramatic blog I've decided not to think about anything CF related at the moment (apart from
Obviously doing the usually treatment routine), I'm loving life at the moment, I'm back to feeling so well for me so don't need to get myself all worked up about situations and predicaments that might not even occur!!

And to be fair I'll know where I stand more at my next hospital appointment on the 19th and may even have the new drug then, although not getting my hopes up as I know they want to do test etc before I start the drug and they want me to be there for my first dose so I don't react or anything! it's funny this is first time in my life ive been eager to go to my hospital appointment, normally I avoid that place like the plague haha

Anyways so like I was saying ive not been focused on my health at moment, looking forward to the weekend as its my mums birthday and going to the summertime ball with her and my two sisters although I don't think there overly joyed about mum and I going as they booked there tickets first but were not sitting together and me and mum are far too cool for them anyways, plus cause I have a gomey badge "disabled badge" I get cheaper better seats at concerts etc see there is a plus side to certain things ;) so I'm guessing if it's meant to be raining on Saturday my sisters might be begging to swap seat with us....GUTTED lol

Also i have some very exciting news!! I'm going to be a mummy to little mason!!.... No I'm not pregnant (thank god) lol me and lee getting a little puppy!! It's not allowed to leave until 22nd July but that's plenty of time to get things ready! I'm beyond excited! He's so cute I fell in love! We're going to visit every weekend until we can bring him home!

So got that to look forward too! And my birthday in a month so hopefully I won't be in hospital this year and il have my little new drug by then too!!

Life is so good makes such a difference just need this crappy English weather to pick up now, not right having the heating on in June!!

Anyways that's my little update on my life

Love love

4,043 hours, 5 months 16 days on transplant list

Xx

Confused Sprog!

Blog blog blog blog bloggggingggggg.......

I'm in a churpy mood so thought it would be a good idea to blog!

so my thoughts and feelings at the moment basically look like this

LKADIWUFGB'466$%&2EG9847985JFLWO==[='/23"£>EDNW308 RU"!£cfGGG

haha which translates to ahhhhhhhhh, very confused about certain things in my life..health wise!!

i feel the best iv felt in probably about a year now! had clinic on tuesday which was 2 weeks post ivs/ 2 week hospital admission, which historically i have always ended up going to clinic with a view of getting myself back into hospital or at least back on the list waiting for bed...but not this time...nope im super sprog at the moment, not using my wheelchair, barely on oxygen and it showed by my lung function results which has been the highest in such a long time without being on steriods or anything it was 19% and my resting sats were 94% (whilst chatting away) at clinic but they have been 96% at home!

so all in all pretty bloody good!!

the reason im so confused at the moment is about this drug im going to be starting in next few weeks, the Kalydeco!
now baring in mind until about 5 weeks ago i knew absolutely nothing about it, didnt even no this drug excisted!
however after the doctors approached me and told me briefly about it and that i would be starting it on compashionate grounds obviously i have gone and done my research! (like any normal person would do)

in america its now called "blue lightening" due to the results being that good!

back to why this has made me confused is im now doubting my decision about "being on the transplant list"

transplant is a last resort as we are very much told whilst going through the assesments etc....

well now that i have been given this oppounity to have kalydeco surely i should at least give this a shot before i accept a transplant!?

iv been on the list over 5 months now without one false alarm and i no reaslistically i might never get a call or i could get a call any minute now but....

transplant is AMAZING but it is in no way a cure, it comes along with a whole new set of problems, so therefore it really should be when nothing else can be done....

but the results for this new drug that i have read about or been told have been really amazing! i understand that its not going to undo damage that has already been caused in my lungs, but does anyone really know how much damage my lungs have??

got all this going through my head!

my head feels alot clearer today than it did yesterday, i felt like i was going into melt down literally panicking and so tempted to take myself off the transplant list- i have since calmed the fuck down haha and relaxed and got my head together.

iv got it constantly going through my head, night and day- even bloody dreaming about it like a proper freak! haha

when i was at clinic i told my cf team my feelings, i made it quite clear how i felt.

i mean in my situation what would you do?

this originally was my little plan!

temp come off the transplant list and try this drug, if its going to work i think it works pretty instant from what iv heard from other people you get results within like weeks, so my thought was to come off the list for a month or 2, give this drug ago, see what happens weather my lung function improves etc if nothing happens then at least i no i gave it a shot and get myself back on the list and carry on with no regrets.

i no that may sound crazy because i could miss my chance for a call, but i can honestly say hand on heart i wouldnt regret it.

what i would regret more is carrying on now and for example if i got a call now for new lungs and going ahead with it without trying the kalydeco drug....i would live with regret knowing i didnt try EVERYTHING before having a transplant ESP if i was to get new lungs and then have bad rejection!! gotta be realistic!!

plus with my head in this frame of mind at the moment my heart wouldnt be in it, and transplant is a long hard road for recovery so you gotta be 100% dedicated!!

see my dilemma now!?

mentally im a tough cookie i can handle alot of shit!! and im the most determined little person you will ever meet, so telling me that something wont work or might not work only makes me want to prove you wrong even more....you may think this is childish but its made me who i am today!!

my cf team at the brompton have strongly advised that i stay on the transplant list and see how things go, which iv decided is what im going to do plus dont wanna piss anyone off! haha

i know what my gut instinct is though and i know exactly how im feeling about my life and all of this so i will do whats best for me! everything happens for a reason, so lets see what happens.....

On a completely non health matter.........i LOVE  living in Cobham! i LOVE my bungalow more than anything iv ever had!!
i found some really good sunbeds recently so me, bianca and caroline have been hitting them hard! i started going a bit orange so decided to calm it down for a few days haha
my friends beautiful baby girl was born on 27th may weighing 7lb 1oz she amazing little isabella,
 heres a little pic of me and bella...

also went to the xfactor auditions in london on wednesday which was pretty cool, had good seats proper odd balls that audition for it though, makes you wonder what planet there actually on! and omg i have a new hate for nicole scherzinger!! most annoying judge ever!! talk about taking about an hour to say about 2 words! pfff anyways....

thats enough blogging now or il talk more crap!  

love love

3,924 hours, 5 months 11 days on transplant list

xx