Been a rather poorly bear.
To be fair I have had a couple of okay days, I managed to bake cupcakes with Jordanna which was mighty fine :)
But mostly I have been rotting in a hospital bed. They just cant fix me.
A lovely bunch called the Bosdet Foundation over here have bought me my very own shiny new laptop! And I am now also equipped with a dongle so internet access in hospital is now possible almost always :D very happy about this.
Mainly I'm feeling rather guilty that I have no idea what's going on with anyone! And here I'm meaning with my "real-life" friends as well as bloggy and CF friends. So I ask you please would you comment and update me? With your own news and anything else I should know? I'm so scared I'm missing something, that someone is really ill or something?
Love you guys. xx
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Tuesday, September 28, 2010
Tuesday, August 3, 2010
"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.
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.
Thursday, July 29, 2010
Hello world...
So I'm still here,
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
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
Thursday, May 20, 2010
Majorly Violent Hiccups
...have plagued me the last two days.
But I'm breaking out of here! Wahoo :)
After an anxious day spent trying not to get my hopes up too much, the doctors finally came round and literally just said "Okay, so we're happy for you to go." All the waiting all day for THAT?! And I'd missed my usual flight by then. But now, after a very hectic hour spent panic-packing, I have just time to blog a little and munch my apple before I leave for the next flight. It's with a different airline to my usual and apparently the planes bear a resemblance in size to toy aeroplanes, so this should be interesting...
I am a very nervous flier.
HAha.
Anyways, slightly changing subject to distract myself from the shaking and sweaty palms I can feel approaching, I am so grateful that my dad squeezed a lot of my stuff into his bag to take back after he spent the weekend here... My case is bursting at the seams, and my big handbag weighs about as much as a small person. Oops! How could I have actually accumulated more stuff whilst being here? I sent the clothes I bought back with dad... And I would expect to have less than when I came over seeing as I brought bottles of Ribena and crisps and chocolate with me! Hmmm... I s'pose I do have a bunch of medications they've given me. Oh! I have a new neb! I finally got an eFlow wahooo :D Now yes, I know that it's tiny but when you first get it there is lots of extra bits and bobs. That must be it.
Ok, well, off to see if my toy plane can make it across the channel now :|
Wish me luck. xx
I can't wait to get home and do some crafty stuffs, I feel deprived of journalling and designing and making jewellery, I really do. I can hear my silver calling to me...
But I'm breaking out of here! Wahoo :)
After an anxious day spent trying not to get my hopes up too much, the doctors finally came round and literally just said "Okay, so we're happy for you to go." All the waiting all day for THAT?! And I'd missed my usual flight by then. But now, after a very hectic hour spent panic-packing, I have just time to blog a little and munch my apple before I leave for the next flight. It's with a different airline to my usual and apparently the planes bear a resemblance in size to toy aeroplanes, so this should be interesting...
I am a very nervous flier.
HAha.
Anyways, slightly changing subject to distract myself from the shaking and sweaty palms I can feel approaching, I am so grateful that my dad squeezed a lot of my stuff into his bag to take back after he spent the weekend here... My case is bursting at the seams, and my big handbag weighs about as much as a small person. Oops! How could I have actually accumulated more stuff whilst being here? I sent the clothes I bought back with dad... And I would expect to have less than when I came over seeing as I brought bottles of Ribena and crisps and chocolate with me! Hmmm... I s'pose I do have a bunch of medications they've given me. Oh! I have a new neb! I finally got an eFlow wahooo :D Now yes, I know that it's tiny but when you first get it there is lots of extra bits and bobs. That must be it.
Ok, well, off to see if my toy plane can make it across the channel now :|
Wish me luck. xx
I can't wait to get home and do some crafty stuffs, I feel deprived of journalling and designing and making jewellery, I really do. I can hear my silver calling to me...
Subscribe to:
Posts (Atom)