Thursday, 21 June 2012

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

3 comments:

  1. one very brave and inspiring girl - wishing you better and better!

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  2. Hi George

    Came across your blog by chance and have to say it's really inspiring!

    I also have CF although fortunately am lucky and maintaining pretty good health. You sound like my kind of person, love how positive you are and your words about not being defined by CF really ring true with me! (and I am also a tanorexic..!)

    Stay positive and I'm sure your special new lungs will arrive, got my fingers crossed for you!

    Lily x

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  3. I have no words..................just want to say you are such an inspiration! I take my hat off to you. I hope you do prove your doctors wrong, you go girl xx

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