Friday, 28 October 2011


Those crap sats resulted in me getting admitted.

I felt absolutely awful, three days of sats refusing to budge above 92/93 was taking it's toll, I was confused and my headache was getting ridiculous. In hindsight I probably shouldn't have been driving a few hours before we decided to phone up the hospital, who told me to go to A&E, through to EAU and take it from there.

I got there and my sats decided to stay at 95(!) A couple of hours later when they next did my obs, they dropped to 90 and along came the oxygen, which killed my headache pretty fast, so I was right in thinking it was the sats giving me a headache. It's sort of a shit victory - yay I was right... but being right involved needing O2.

Anywayyy, as it was EAU it meant nothing short of every test under the sun. So xrays, ECG, blood takes, blood gases, constant sats, BP and temp etc etc. I was properly nervous about the blood gas, especially when the Dr went 'Don't worry, I'm good at them!!' (It sparked a sort of over confident feeling, as if he was trying to convince himself as well as me) but it barely hurt, so I guess he really is good at them! He was a cool dr, he was young and we talked loads; it's always nice to have chatty drs rather than the type who are all quiet and moody.

I spent about 16-17 hours on EAU in total, I was meant to be moved to ward 52, which is the respiratory ward with a CF unit, but there were no beds at all, so I was moved to a cubicle on EAU until Thursday afternoon when I finally got to my ward. There were still no beds on the CF bit (there's only about 6 CF beds on the unit I think) so I got the crappest room of all, which was the only one available and is clearly used for either people they hate, or as a last resort - its round the corner from the nurses station and for some fucking ridiculous reason there is a buzzer and light on the wall outside the room that goes off every. single. fucking. time anyone on the ward presses their buzzer. It's such a design fail as it really should be in the nurses station instead of round the corner practically in the patients room. I pissed off a nurse for complaining about it too. It's not my fault that of all the things I can/can't hear, that is bloody loud and I certainly can hear it!

So yeah, crap room, not a CF room so I had none of the luxuries as I did last time - no tv, no fridge, no opening windows...!! Obviously they have those crap pay tvs put they're not worth it. There is actually a cinema in the hospital, and the woman who works there came around and asked if I'd like to go to the cinema. I was a bit confused with that one and I said there wasn't much point if it wasn't subtitled b/c of my hearing, so she left instead. I kept thinking how I should have gone regardless, it would have gotten me out of the sodding room! I was only on O2 until I was moved to ward 52, when the physio came up to see me and my sats hovered around 95 (dropping to 93 when she wasn't looking, I have a coughing fit and they shoot up to 97, make up your mind!!!) so she took the O2 off me and I was fine without it, but they STILL wouldn't let me leave, wanting to check my sats overnight too.

I'm not entirely sure anyone actually did check my sats that night though. The nurse came in around 5pm and tried to give me my fluclox that I have at night, so I corrected her and she said I'd be given it at 10pm instead. I had some veryyyyyy nice visitors who cheered me up (and ate half my haribos) and then the nurse came around at 8.30 and said visiting time was over, boooo :( No one actually came in and gave me any meds or did my obs or anything as far as I remember that night. Last time a nurse had been in my room was the 5pm fluclox confusion. SO! 10pm rolls around, and no one comes by. I had my meds with me anyway, and I'm not a child so I'm assuming I'm allowed to self medicate with my night meds. However, it was really bloody irritating that no one came around as I needed saline, syringes and needles etc so I could give myself my IVs (I already had the IVs themselves as I'd brought my ready made ones from home). At 11.30pm it was getting stupid, I thought maybe they were doing their night rounds and would get to me and my crap cubicle last.

Obviously not.

I went to the nurses station and they practically blamed me for not getting them sooner. Excuse me for doing your fucking job for you!!! Ivs done and all that jazz, I eventually fell asleep and woke up at 4.30 am with a hell of a coughing fit that really, REALLY hurt, I couldn't tell if it was exhaustion from how much I was coughing, my ribs hurting or my lungs, but something really hurt. No one had been in my room (and I was fully ignored all night as far as I'm aware) as my light was still on (they always switch it off if you fall asleep with it on). A very pissed off me was woken up at the crack of 6.30 to do my own morning IVs. So I spent the entire morning waiting for the dr who basically told me right away I could leave, yayyyy!!

Not doing that again, that's for sure! The bright side is that they let me have the food off the CF menu rather than the shitty normal menu, and it's actually edible! There's a load of choice and they've definitely improved it. I can't help but imagine the other patients staring wistfully at the nice food (and randomly, pretty trays! Haha, instead of a crap beige tray, I got a rainbow stripey one, how nice!) whilst they keep a nervous eye on their own food which is meant to be 'beef casserole' and looks nothing like it.

I think the moral of this story is, try not to catch a cold, which goes to your chest, causing a bitch of a chest infection, resulting in needing 3 weeks of IVs far sooner than you would have preferred, and fucking up your sats royally so you have to spend three days in hospital, half of which were tethered to the wall on O2, before you can finally go home and enjoy decent tv, internet (priorities...) company and endless decent cups of tea :)

Also, Gem is awesome :D
My war wounds

Pretty late. Pretty bored. Pretty sick of the O2 already...

 My barcode :D

I did enjoy that tray... Food wasn't bad either!

Wednesday, 26 October 2011

She returns... with a hell of a ramble

I've just worked out I haven't blogged in 21 days. Feels a bit strange to be wittering on again so bare with - Im currently battling with a 3 day strong crappy sats headache (lowest being 85%, highest being a bit pathetic at 93%... ffs).

So yeah. I'm trying to remember what I've done over the past 3 weeks. Bit of a challenge in itself considering I have trouble remembering what happened yesterday. Mostly I've been at college, its a lot better than first year I'll admit - whilst we have been thrown right back into it and have already completed the first module consisting of three projects, its fast paced but enjoyable. Plus the social side is improving too; I'm very quiet around people I don't know very well, its a hearing thing, but it's getting better, and knowing sign language is helping even more, as theres a woman who can sign too, and we have a laugh either having complete conversations in sign with everyone else wondering what the hell we're saying, or teaching the others various signs... mostly swearing, haha!

College aside, my health has been... shit. I was doing fine, my last IVs did very little, I blame the constant insomnia I had from the last week of them exhausting me so much that the IVs didn't end up working because of it (don't argue with my logic, it works for me) but I was doing well enough that at clinic last week my dr sent me off with just another appt in a few weeks time, no ivs or anything needed or scheduelled as everything seemed to be going well enough - he'd also ordered some blood taken so they can check my IgE levels and see if we can get me off pred, or at least lower the dose; at their highest a couple of years ago, they were 2000+ b/c of my ABPA, and my levels really haven't been checked at all, aside from my annual reviews, and last time they'd come down to below 1000. However, they really should be below 100. So if they've finally come down, I can get off pred, which I've been on the whole time since I started it nearly 3 years ago. Talk about longterm.

But THEN... I caught a cold. Usually I'm not too bad, I have managed luck in the past to avoid it going to my chest, maybe picking up a bit of an increased cough but nothing worse. This one knocked me for six, and showed every sign of a hell of a chest infection. We're talking low sats, the resulting headaches, coughing 24/7 with a horrendous cough, hemos, coughing till I throw up (resulting in loosing the most amazing cake I'd ever had, so I went back and got one again the next day, HA!) general exhaustion and feeling like crap. So the only choice was to phone the hospital and say I needed IVs. The dr agreed over the phone and had the form sent off before I arrived a few hours later. Unfortunately when I got there, it was the dr I hate, with a passion, who saw me. My lung function dropped 10% in a week, and he said 'well its still quite good' - my ARSE. I don't know why he won't listen but I don't feel like someone with the lung function I have. At the moment its in the 50s, I'm well aware some people would give their left arm for a lung function like that, but I just don't feel like it's that high myself. I'm a bit backwards, my lung function completely doesn't reflect how I feel. It doesn't even help I only managed one blow on the machine before the tech took pity on me and asked if I'd like to stop, as the coughing fit after that one attempt was verging on ridiculous levels.  

So IVs were started, I got a lecture off my physio as I said I was too exhausted at the moment to get past 10 minutes of physio, my dietitian took pity on me and refrained from her own lecture on my weight, accepting that b/c of how crap I feel, I can't help loosing weight right now, and it wasn't very much. (But I am trying - the amount of kormas I eat, and constantly stuffing my face with crisps and chocolate. It beggars belief how I loose weight really.) And I also had the usual argument with the dr as I just generally dislike him and I'm sure he doesn't like me as I'll admit that I'm not your average patient and anything that is strange and unlikely will happen to me - probably out of his comfort zone compared to patients who follow the rules and get ill when you'd expect them too and only get side effects that he expects. Okay that sounds like a digression but I'm sure I have a point - for example, this insomnia lark, I'm positive that IVs were to blame, and as soon as the course of IVs finished, my appetite came back and I started sleeping again. I told the nurse when I went for a port flush, and she relayed it back to the dr. Apparently he said that its very unlikely the two are related as insomnia isn't a listed side effect for either of the two IVs I was on at the time. So basically, I deviate from the book, and he doesn't like me for it. Or at least thats how I feel.

This course of IVs seems to be going differently than they usually would. I'm on colo and ceft, and colo usually sends me into a drunken mess for at least a few days. This time that hasn't happened, and although I don't exactly miss walking into walls with more frequency than usual, it's a bit unsettling. I'm not sure if the insomnia will come back this time or not. I didn't sleep aside from maybe an hour or so on monday night (after starting IVs earlier that day) and it can't be just random as I never have insomnia, not like this. If I do, it might keep me up a few hours, but I don't see every sodding hour up till about 6 or 7am, drift off, then wake back up and fail at any more sleep, resulting in effectively being awake for almost 36 hours straight. I did sleep last night, but I'm not sure how much, and I'm not sure if it was just pure exhaustion from coughing horribly, constantly for a couple of hours with no let up, and waking the entire house up in the process.

My head is now absolutely pounding now so I think I'll just add a few photos and then go stick my head out a window as per Gem's advice and see if we can't get my sats back up, at least for a bit.

 3rd project - Hands face feet. Creeped everyone out with this doll, haha!

 First project of 2nd year - Mask

 I got a new tattoo :D This was taken a couple of hours after it was done, it's healed up now and looks  a lot better :)

I got a hold of my xrays along with my med records :D The one on the right was 2004, when I was 12, and the one on the right was taken march this year when I was 19. My port looks different, that's cos it is - they're my 2nd and 3rd ports.

Wednesday, 5 October 2011


It's done.

And it was the scariest thing EVER!!! I remember saying that I loved it last year, which I did. This year was different as it was a LOT higher, and somehow a lot more scarier on the edge of a building compared to the wrong side of a bridge. To stop any of us spontaneously falling over the edge, we were attached to a line via the harness whilst we waited. Pretty sure I was shaking the ENTIRE TIME!!!

If you're cool and have me on facebook, the album of the photos (plus the ones from last year) are here
And I've put them on Flickr too

If you think I look scared in those photos, thats cos I really, REALLY was! I'm so scared of heights. I'm pretty sure that I kept my eyes closed for the majority of the actual zipslide, and the brake was particularly painful when it smashed into my sternum, but I did survive and I'm still collecting fundraising money, so it's all good and worth it!

Here's the video :D

Long year? Long post

This year has been weird. I haven't done anything. Haven't achieved anything. Some time at the beginning of the year these days, I w...