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.


  1. Hun that's good news that you're maybe getting back to Jersey!!

    I'm such a bad friend with a bad memory, why have they not got you on the transplant list again? You need to keep reminding me!!

    V xx

  2. Yay!!! Jersey!!!! Bleurgh fortisips! I really hope the weight starts coming back soon!! Thinking of you and you may get a random phone call tomorrow. I'm soooo bored!! xxx

  3. I really hope you get back to Jersey :) it will probs make you feel better just to see some friendly faces, obv your mum aside, and boy am I glad she's there helping you out.

    Good to hear an update from you :) *hugs* xxx

  4. Good news about getting back to Jersey hun :) sorry you've been having such a tough time lately, also like Tori - was wondering if they have actually mentioned transplant to you??

    Agree with you about the % when I was younger I used to think people were really ill at about 30% and now that's what I am so I would now be one of those 'ill' people lol!

    Thanks for your comment about someone to chat to, would hate to offload my problems on to you when you've got so much to deal with yourself! So I'm also here if you'd like to chat :) we could complain together, hehe!! x

  5. Being 'home' will be nice, i think of you a lot!

  6. Me again! haha! You have a blog award waiting for you on my blog!! :) Pop by and pick it up next time you have a moment!! Hope you're ok!! xx