Sunday, 3 June 2012

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



4 comments:

  1. It is so hard on the list, so many thoughts go though your mind.I understand,you look for any reason why you don't need a transplant it is scary and stressful. I also know how quickly things can go downhill when you have a problem with your lungs.One thing about this drug it may help, but may not repair the damage to your lungs that has happened so far.I think you should be happy that you are being offered the drug and take your CF team's advice, take all the chances you can to stay well including transplant:)

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  2. If I was you, I would remain on the transplant list. I have your genes and have had a transplant (6 years ago this summer). The benefit of the drug is that it will give you time, perhaps many more years so transplant isn't (as) urgent. But transplant -if it works- is wonderful. I understand the feelings that you might have, and once you have a transplant, you have many other problems added to your list, but I think I genuinely didn't realise how poor my quality of life was prior to transplant until I went and had one. I'm def someone who tries to get on with it, works around situations so I can still go or attend parties and stuff, am fairly private about my CF. But I am a different person having had a transplant, it's unreal. Nobody would even guess by looking at me, I have CF now. I've gone travelling, to uni, and am now living abroad. WIth the lung damage and scarring that's already there, you're probably still at risk of infections and stuff even if the kalydeco works. It's a tough call but that's what I would do. Taking it isn't going to do you any harm I wouldn't think.

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  3. When you start it (if you start it), you will be coughing up years worth of gunk - something to look forward to! It is still such an unknown long-term, but I think it is worth a good try - but I don't know your situation or genotype at all.... Best of luck with the decision making!
    Ruth

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  4. Hi, you truly are in such a difficult position my best friend was in this situation on the transplant list and she was in a termoil of what to do. Keep strong and your blog is pretty cool :D
    X

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