So this is my last blog before starting kalydeco tomorrow morning and hopefully changing my life for a while or even forever!!
My expectations are soooo high for kalydeco and as nearly everyone at this hospital thinks that's a bad way to think I don't!- lets face it if you really want something to work and you aim high then you get what you want and it will happen, this drug has had amazing results so why won't it happen to me? I also believe in power of the mind!
I control how my life is going to be and what happens!
If I want this drug to work to my expectation then it will! I'm on a mission to prove it to everyone!
Also something iv never really spoken much about before but it's something that's really important to me and i feel that honestly it works!, and if everyone in my position or with any deteriorating illness like mine was to think the same way as me, it would honestly help them be a stronger person and healthier in a way.
Some people brush stuff like this off, so you gotta be open to it to believe it.
A pure example- at the beginning of this year I was feeling pretty negative, not completely as I'm not a depressive person but in a sense I started to give up, come to terms with the fact that this was it, I was constantly getting infections and I was basically waiting for a transplant to change that! I hated where I was living and all I wanted was a nice bungalow with a garden and Get a dog....
From day one of going on the transplant list iv said to my mum, family and people close to me that whatever happens I really wanted to get a new place, then a dog then my transplant call..... And funnily enough that's the way it has happened minus the transplant call...
Strange, coincidence? Or is it because that's the way I wanted it to go?
And since getting the two things, I'm a much happier person I LOVE my life no1 can put me down and my health has been so much better recently too!
I want people to think about all of this and put it into there own life's, how they want there life to be weather there not well or just having a bad time, your in complete control of your life no1 else.
Anyways enough preaching haha
Sooo I'm being aloud to escape hospital aswell tomorrow which I'm
Very excited about! Plan to have a fatty breakfast and take my first dose of Kalydeco at 10am!....maybe with a giant glass of champers! Haha
The doctors want me to hang around a few hours to make sure I don't react... Not 100% sure this is true as andy pandy said it to me even though my consultant didn't mention anything of the sort in ward round today...I think he just likes to annoy me on my release day, so il nod and agree but I'm not hanging around too long! Lol
Also got my little machine to monitor my blood sugars today, interesting little thing! So il keep an eye on my sugars but they have calmed down quite a lot :-) So hoping those high numbers were a one off.
Don't really have much more to go on about all my head is thinking is kalydeco kalydeco KALYDECO and it's killing me the fact that it's sitting right in front of me and I cannot take a tablet until 2moz morning but hey Ho all good things come to those who wait ;)
Gna try see if I can get one of the staff to print off my x ray so I can do a before kalydeco and then maybe one in a few month into it hehe
13 hours till start kalydeco
4,878 hours, 6 months 20 days on transplant list
I love your fighting spirit and positive energy! My daughter (14 yo w CF) and I are so excited for you. :) Please keep us posted on your progress with blue lightening!!
How is it going?! So excited for you! xReplyDelete