still fighting.
In as quick a summary as I can manage, here's what's happened:
Managed two weeks out of hospital. Spent a week in a morphine haze in Jersey hospital where they then decided they were so worried about the fact that I was getting worse that I needed to go to Southampton again - cue air-ambulance and more days of not remembering what even happened, who I talked to. Couldn't eat for over a week, weight had already dropped to a lovely new low of 33kgs. Started becoming more aware that I was on the ward in Southampton. Started to eat a little but all conversations with doctors revolve around my weight. Request CT scan to see what exactly is going on in those lungs, told no because I had one only 6 weeks ago. Had chest xray and doctors decide actually CT would be useful. Come back with report that "they have never seen such shocking amounts of damage in such a short space of time". Saw CT. Spent afternoon in shock at how scarred and gnarly my puffers look. Oh, and had lung function resulting in 22% best FEV1. Doctors say that they don't know why but my cepacia has just run riot and destroyed my lungs faster and more efficiently than ever before. Changed onto new antibiotics - pullin' out the big guns! Likely to be long term. Decision made to have a Peg (feeding tube) inserted into my stomach as I just cant seem to eat enough - eating until I'm stuffed plus liquid calories in Ribena is not giving me even half my required calories. Days spent in agony - chest constantly on fire and legs at their worst - pain from osteopenia plus muscles seizing up from sitting so long, plus pain from immense swolleness due to infection using up my proteins. On constant morphine drip plus top up doses and other painkillers, but can't think from the pain 95% of the time. Mum here for cuddles but causing major problems with her work. I hate the burden that I am - I can't even lift myself into bed at the moment.
Enjoy the whinge?
:) sorry.
I've got some sweet pics (unfortunately only camera-phone quality) of my drug cocktail and swollen tellytubby cankles for you to look forward to.
I'm waking up pretty much like clockwork between 4am and 5am every morning and not getting back to sleep (damn the pain) so this is a new experience for me, being on the computer before lunchtime!
Comment if you feel so inclined and update me on you (or others?!) - I'd like to know everybody's news and how everyone is health-wise...will be making my way through the blogs but there is a LOT to catch up on!
i'll leave you with another hospital webcam photo. love to all <3
Sending you a virtual hug, Lauren.
ReplyDeleteLaura xxx
Sending you the bigegest hugest hugs in the world!!! I am so tempted to run down to southampton... well, drive and come keep you company (But obviously from 3ft away :P) I'm about to update my blog on me but I'm thinking of you and sending mendy vibes and hugs! Expect something in the post from me shortly :) Huglets! xxxx
ReplyDeleteaw love, really really sorry things are the way they are for you just now, sending you massive hugs and love vibes!
ReplyDeletexxx
You know how I am so no going to fill you in, you can read my journal and blog in your own time!!
ReplyDeleteI hate that you have to go through this I wish I could just magic it away!!
Greggers and I are going suit shopping today, will try to get some sexy suit pics of him for you to enjoy!! That's if you think he's as good looking as I do xx
ow bear :( :( / :)
ReplyDeleteThe happy face is because i check this site everyday and to just see a new heading was the most exciting thing in the planet. the unhappy faces are because of all the pain/scary things you're going through at the minute :( I can't believe your past few weeks. they sound like a nightmare. I hope that you get some good news soon.... don't worry about the muma, she wants to be there and you are obviously more important to her than her work. you are not a burden OK!!!!
With me...... mmmmmmm well i've been working pretty much full time this summer. When i look back on it, i think all i will see in my head is the BOATFAYRE DUTY FREE GERMAL BUNKER which i spend most my days.. :/. Otherwise i'm good. jordanna and i have been dancing a lot and apparently i pulled down her dress whilst simultaneously pulling UP her dress on the dance floor... LOLZ all round. she then got me back by pulling UP my dress, revealing my skimpy ugly LEOTARD which was wedgying me to the max. hehehah
sending you ALL of my love and thoughts loz, there isn't a day that goes by when i don't think about you. LYMTTCT xxxxxxxxxxxxxx
:( *Hugs* At least the peg will make things esaier. I've been there and done that, my weight went from mid 20-kgs (although I was 11 at the time, still underweight) to something in the 30's in a fairly short amount of time which got them all off my back bitching about my weight.
ReplyDeleteI wish I could fix it for you Xx
Awww Lauren :( I'm so so sorry to hear things have been so bad for you lately, I wish CF would give you a break! :(
ReplyDeleteI've also had a peg in the past and it helped with my weight alot.
Really hope things pick up for you soon hun :(
Sending loads and loads of love and mendy hugs :) keep your chin up chick xx
Big virtual hug to you.xxx
ReplyDeleteso sorry you are having such a painful and scary time, I didnt realise you had cepacia, I know it can be a bastard. I think the peg was a good idea, the last thing you need is low weight making you even worse, the weight will help your body! Thinking of you hun xxx
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