Thursday, 14 March 2013

Transplant talk - in limbo

So yesterday i saw my main consultant at the Brompton and we talked about transplant....
It was not good or bad news, kinda in the middle.
So basically if my lung function stays stable at where it is now i have over 2 years to live (whooo!) This means its not worth taking the risk of transplating me yet, (in his eyes) but it will be reviewed every 3months and like normal i can contact him anytime if i get sick or want to ask questions or anything. But the thing is, when i get a chest infection i ALWAYS get really sick... like high C02 and lower oxygen levels than normal and it always causes a decline in lung function which i never get back. The risks after transplant are high but for me its quality of life over quantanty. I would rather have 5 years of a great life doing everything i want to do with little restriction than 10 years stuck like i am now needing a venitilor to breathe for me 12hours or more everyday and oxygen just to keep me alive..... In my life time i have already done more and gone through more than most people do in 50years so its definite in my eyes that quality is much better than being a total bum for a whole 'average' life hahahha
My consultant is also hoping to start me on rotated colomycin and tobramycin nebs instead of just the tobi which i think will help keep the lung function!!

I have also been of steroids for a total of around 8months! and from my heaveast i have now lost just over 14kg!! But the bad side to this is that the experiment failed... my neurologist said that if my muscle disease was from my medication, after 3months of stopping it i would see improvement and a good improvement after 6months. Its now over 8 months and i have declined since i stopped the medication. This proves that it is not the cause of my muscle disease and that it is in fact, and in their words 'organic' muscle disease. I am seeing them in April so this is not confirmed but by going by my last clinic letter this is the outcome. My muscle biopsy also showed my muscle had glucogen in it... this may me a clue. But im not saying anymore because thats all i know (well whats in the letter) and i dont know what to make of it.

So if i do actually have a muscle condition it will stop me getting a transplant.... which scares me A LOT now!!

But to be fair everything in life is uncertian and i suppose you just have to live for the day and get on with it - with occasional days of feeling sorry for yourself haha Oh and not forgetting humor! thats how i deal with EVERYTHING!! make it funny and its ok ;)

I went to a UCAS fair thing today, looking at uni's and stuff and i think i want to go to Imperial College London, best in the country for Biomedical science i hear ;) but i need three A's in my A-levels!! OMG!!! but i can always try! i getting A's and B's at the moment so you never know! I might even find a cure for myself and My friends, just maby - you know anything is possible if you try!

Chloe :)

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