Tuesday, August 10, 2010

Heading Home?

I might be heading back to Jersey on Thursday :)
It's only back to the hospital, I'm just not strong enough for home - I'm not strong enough to get further than the loo without a wheelchair! - but at least I might be able to have a few visitors, and they can bring me foooood :D
And that's about all I have to say I'm afraid! Sorry to bore you. I've been having small amounts of feed into my RIG, (not PEG, but basically the same thing I'm told...or have I said this already?) just half a Fortisip twice a day...it's making me feel really full and bloated, but it's a start and hopefully once i'm back to normal and moving around more etc. I will be able to tolerate more and so be able to get more than a measly 300 extra calories. Im definitely still down on my weight though its hard to tell because of all the swelling and fluid retention - I'm showing as around 39kgs but I think im probably still more like 33ish...my watch nearly fell off my wrist today it's so loose. Which is a bit of a worry.
I had another lung function today which came out at 21-22% again, so no real change, which is disappointing but not really surprising. If I don't have a transplant I could possibly carry on at this level for a couple of years, and I'll be trying bloody hard! But equally things could so easily go downhill too quickly to pull back...I'm feeling quite scared for the first time. I've never been scared of dying but since I've always seen 20% lung function as a sort of cut-off point - you either get transplanted or you're on your last legs, or something like that, for some reason - maybe it's just hitting home a bit.
The docs took me off oxygen yesterday afternoon and my Sats stayed around 94% which is about reasonable, so I thought I was finally free! But during the night they dropped to the mid-eighties which is less acceptable, so it was back to sore nose and oxygen tubing, and it looks like overnight oxygen may become a permanent fixture in my life. I'll have an official overnight oxygen test at some point while I'm in Jersey hospital to decide.
So there we go, I've babbled all my health news to you. I'm sure you found it riveting ;)
But this is for me to record stuff as well so *sticks tongue out at you*
Hopefully things will keep improving. Wish me luck - I don't want the routine of mother hen having to shower me to become permanent just yet please.
PS. Thankyou mummy bear, for being here and doing everything you do. I love you.

Monday, August 9, 2010

Beady giveaway!

There is a giveaway going on at Copper Diem of these beauuutiful beads, I'm very excited about it! :)
copper diem giveaway

Tuesday, August 3, 2010

Topshop Mystery! and PEG tube...

I have a mystery to solve, and wondered if any bloggy friends could help: I have been sent a package. This package is from Topshop, and contained a rather nice red checked shirt, but no note at all to clue me in on who it might be from! And that is the mystery - Who Is The Sender of said checked shirt?? I'd quite like to thank them :)

Also just to keep anyone who might be interested in the know, I've been told this morning that my PEG (feeding tube) will be put in late this afternoon- they just happened to be able to fit me in and my temperatures have been behaving in the last 24 hours so they decided to seize the opportunity and go for it! So wish me luck and hopefully it won't be too painful afterwards etc. :) Ta!

"a period of several weeks to months"...

...are words which have been thrown around. Not thrown around i suppose, as that implies casuality and lightness, when actually it was in a really serious and hard conversation with one of the doctors. Basically I was asking how long I could have left to live, for want of a softer way to put that. That wasn't the straight answer, thank goodness. But when asked what Could happen, what Could be the worst case scenario, she wasn't exactly hesitant to warn us that they might not win against this new battle of the bugs, which has really scared me. And if they find they aren't winning, all they would be able to do is send me home with IVs, make me comfortable etc, and wait for "a period of several weeks to months" for it to take over my body entirely.
That's quite a shocking thing to hear at 18 years old when the same morning you've been talking to that same doctor about how desperate you are to get home and bake cupcakes, and she is agreeing with you about how definitely that needs to happen.
Jordanna this is what I wanted to talk about on the phone but the parents came back in the room and somehow I just couldn't talk properly with them there. I don't know if I would have been able to anyway though to be honest! :) i love you.