Been going over a few of my last blogs and I feel like im sounding proper rough, been swearing a lot do sorry about that. I'm not that bad in person! Although I do want to keep my blog very real! And seriously need to start using spell check and read over my blogs before I blog them! Haha
So not gonna lie although I still feel
So good for me at the moment I think I've become quite in denial about starting to "dip" again, I don't feel as great as I did a week ago.
Chest esp at night has become tighter, sat on my oxygen tonight properly for first time in a while, still sat there struggling untill lee said to me though!!
I suppose feeling really well is such an amazing feeling when you start getting bit rubbish you don't wanna believe it cause then it just leads to ivs, more hospitals visit or being stuck in that place for at least two weeks- cant be agged with that need some time out!!
I have the Brompton next week do see how i am then. Just wanna start the kalydeco now sooooo exciting and so hope it works to the absolute max!! Wanna prove everyone that doubted me about it and how it might not work much for me!!
One problem with feeling a lot better at the moment is and this is a massive fault of mine but I have no time or patients for
1. Moany people!
2. Obsessive people!
3. And people that crave attention!
I need to learn that not everyone is like me and people deal with things in there life in different ways!
Just get frustrated when people make things there life when they should be out enjoying life!
Bitching over now! Like I said its a fault of mine and Iv become very snappy and sensitive towards a lot of things recently which I hate! I have strong opinions So sorry to anyone who I may have upset!
Anyways we have a new addiction to peachtree family, his names bow but spelt beau! Mums new favourite child!! Haha mum got him for her bday!! he's a pic of my bathing him today x
That's all I best try get some sleep night xx
4,141 hours on transplant list
5 months 20 days
Xx
Love your blog! I live in Savannah, GA in the US and I am friends with your mom on Facebook. My daughter got to try Kalydeco for one month. She does not have G551D (she has 621 +1G>T and F508del) and her FEV1 increased 11% in 28 days. Unfortunately, insurance has denied further coverage because she doesn't have G551D. I hope you can get started on Kalydeco very soon. I know you will see great results!! Wishing you all the best!
ReplyDeleteWhat a cute doggie!!!! You must be ITCHING to get yours, don't know if I could handle the wait! I started reading your blog from the beginning... might take me a while (lol), but it's awesome seeing your perspective on the whole transplant thing, even though we're waiting for different organs. I see i'm not the only one obsessing over it! Hope you get your call really really soon!!! I think even if Kalydeco does make a huge difference (fingers crossed), stick with the tx. Imagine having like 100% lung volume OMG! Thats just.... wow. Anyway hope you have an easy ride until then :) xxx
ReplyDeleteNo. If Kalydeco makes a difference, stick with Kalydeco. Only 50% of people live longer than 2 years after a lung transplant.... so basically, as soon as you get a transplant, it's over. There is no going back, no chance of fixing your damaged lungs with a new cure or stem cell therapy which will likely come in the future.
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