Hello :)
So i am in a happy positive mood today, whoooo :) Its only 2 days until the Easter Holidays! - this means lots of chocolate, time with my sister and family :) AND I'm seeing P!nk LIVE in a few weeks i really cant wait! Im also seeing One Direction next week.... im sad to say i have to suffer this tourture hahaha but its for my sister so seeing her happy is worth it, i love her so much and knowing i cant be with her for her whole life upsets me a lot. Anyway its a positive post!!!! I had my pre-op meeting with the anesthetist this morning and it went really well i think, we are going for a light sedation so i dont have to be put onto a vent, just my bi-pap but she said if my oxygen levels drop too much then i will wake up in the ICU and get weened off the vent slowly. We chose this so my lungs have more of a chance to not need ICU! I knew this anyway so was not suprised. To be honest i am going to do lots of extra physio, antibiotics and nebs so my lungs are the best they can be for the op and hopefully i can go home the day after or the same day! The only bad thing is that it means i have to wait for an ICU Bed to be free for me to go into afterwards... this could take a while :( But i did say i need the op as soon as cuz i am very uncomfortable ALL the time now :(
So after i will have a tube coming out of my belly just below my belly button, which will be 10000% more comfortable than the tube i have now!! and it means i can wear my skinny jeans again, yay!! haha no more leg bag! :) haha the small things make me happy.
So, yea im hoping to get a date for the op through very soon and i will update when i know anything more! here is a link to some info about what im having if you have no idea... most people dont talk about bladder issues but LOADS of people have them, so yea.... i dont really mind posting to you about it, cuz its part of my disease progression and if you know about it you wont be shocked if you see it one day poking out of my shirt lol
http://www.bladderandbowelfoundation.org/bladder/bladder-problems/suprapubic-catheter.asp
My lungs are quite good at the mo... :) still get the random pain but im used to it now, if you need to you can get used to anything! Im on extra antibiotics cuz i have a joint infection.... random i know and only i could get it haha but its getting better now thank God!
Thanks for reading!
:)
Chloe
Tuesday 26 March 2013
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 :)
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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