Saturday, 19 November 2011

IgE mystery

Does anyone else have issues with their IgE levels? Mine were 2000+ just over 2 1/2 years ago, I don't know how long they'd been this high as my blood was routinely taken when I was admitted with mega bad pleurisy pain. I was put on steroids after this, which I've been on since, and over time my levels have fallen, but they apparently should be ideally under 100. Clinic before last, they took some blood with the intention of finding out the levels, hopefully having them low enough to possibly bring me off steroids completely as they'd been dropping steadily since when I'd had the occasional blood take i.e. annual reviews and when I had clinic yesterday they were still 460, so I'm still on the steroids.

I don't hate them really, they help my appetite and I've had my share of bone scans showing that my bone density is still thankfully normal, however, I should get off them eventually, I don't really want to tempt things to go all crap. I'm only on 10mg a day at the moment, I've had the odd burst up to 30mg for 5 days at times like when my chest pain is worse than usual, and then always go back to my maintenance 10mg. It's just a bit annoying knowing that my levels won't go down to what they'd like, I know I've had (got..?) ABPA so obviously thats a factor, but I don't fully understand the whole thing anyway!

Other than this, clinic was okay, my lung function was up (thankfully! After 3 weeks of IVs they should know what's good for them!) and are about 60%ish, I'm not entirely sure as I don't get the percentages at clinic. My weight has fallen 2 kg within a month or so, and I got a right bitch for that, but in my defense my appetite is so erratic, and I do try, I eat plenty so I really don't know where the food goes. One of the mysteries of a CFer.

I think that covers it. I don't remember finer details really. I did have some student nurse sitting in my room all throughout clinic which was slightly entertaining, he didn't have a clue about most terms that were mentioned (cue very blank expression when me and my dr were having the IgE discussion) so I'm presuming he must be just starting out. Thankfully he didn't ask me 'when I caught CF' as otherwise I would have taken the piss fully and probably said something like 'I caught it from a gypsy at the fair' or something nicely ridiculous just to see if he believed me.

Saturday, 12 November 2011

Procrastinating like a pro

Why can't I just seem to get on with it and get my work experience sorted out?! It's only for a week but the fact that we were given no specific date (other than it has to be completed by xmas) and we have to go around and try and find a photographer who will put up with a student following them around for the whole time, I'm finding it so hard to just get on with it. I have two names of photographers and I don't want to send emails as other people have done the same with different photogs and they either take their time getting back to you or don't at all - which means phoning. Which means I have to ask someone else to do this for me and everyone else procrastinates to and I'm continually told 'why don't you just email them instead?' Err cos I've put this off long enough and it needs to be sorted sharpish.

~~ rant over, haha!

Other than this whole hoo-ha, I'm back to normal after the whole sats ridiculousness, and can't wait for these IVs to be over. The only bonus is that I don't do my abx nebs as everyone agrees that IVs are strong enough and you don't need to do abx nebs too - I still do my HTS though obv. I had a very longggggg discussion about whether I need a neb when I was in hospital as the nurses just got so confused with me and for some reason had my colistin down as a neb. Whilst I was waving the intermate bubble full of colistin in their face and explaining 'no, I have it as an IV, I don't need a neb' and this was followed by lots of 'oh so no neb, just an IV. You have colistin as an IV right?'

Yay frustration! I'm quite annoyed with myself really, I manage to stay out of hospital for yearsssss and then I get admitted three times this year, twice within two weeks. Definitely staying out of there as long as humanly possible; I don't see the point in me going in as I do at home exactly what I'd do in hosp, except have decent human contact and not need people to travel a 30+ minute journey and argue with parking spaces and ticket machines just to see me (which incidentally makes me feel really bad). The only time I actually shut up and deal with being in hosp is if its cos they have what I don't at home, i.e. oxygen. That said, I still complain constantly :P

I don't really have anything else worth saying but I thought I'd get back into the bloggy-ness and start sharing irrelevant stuff like this again :D

Saturday, 5 November 2011

And back again.

After getting out of hospital last Friday, I felt good. I had a couple of off days and a couple of good days. I figured that was just everything sorting itself out and I'd be back to myself in no time. So I went to college as normal on Tuesday. And halfway through my lecture I started feeling crap again. And then noticed my fingernails were turning blue. Brilliant. I felt awful, nothing seemed to trigger this as it started randomly an hour and a half into a lecture where I'd been sitting doing literally nothing (not even really paying attention... ahem. But does anyone?) So I left with a support worker, and she made me sit until the main woman from student support came up and then they could decide what to do with me; they weren't keen on me driving home and wanted to call a taxi, I said no b/c I refused to leave my car at college. So in the end they had two support workers follow me home in their car to make sure I got home fine - which I did, I just felt a bit blahh.

This was quickly explained by checking my sats and being met with a lovely number of 83%.

For fuck sake!!

We eventually phoned clinic and they said I should go to ward 52 if I felt I needed to. I wanted to avoid hospital at all costs, but its a bit inevitable if you've got sats issues and no oxygen at home. I waited it out until about 9ish and the headache was actually crippling me, so I packed a bag (again, sigh) and my dad took me to EAU. A couple of nurses saw me who'd been on shift last time I was in and started cracking jokes about how I'll need a permanent bed there at this rate. What can I say, I just can't get enough of the damn place(!)

I had to wait about 2 1/2 hours until I got a bed. Ironically my sats decided to behave and be at 95% when I was in triage. Great... The whole time I was waiting, I was pissed off, and upset, and in pain, and they can't give you anything for it. I felt like my head was going to split in two, I could barely keep my eyes open from the pain and I was starting to just get physically and emotionally exhausted.

When I finally got a bed in a cubicle, the dr came around and did all her doctor-y tests. Sats at 97. WHAT THE ACTUAL HELL!? I felt awful, and my sats were just being morons at this point, I know what I feel like with crap sats so I didn't understand why they seemed fine on the machine. The dr seemed confused as hell with me so just gave me oxygen to see if it helped. It did, my headache went away, everything seemed clearer and i felt almost human again. Typical that this was at 3am and I wasn't tired anymore. Oh well, in time for a 3am xray!

I'm having so many xrays these days I'm fully expecting to end up with some trippy superpowers.

The next day, the physio came in, and doing physio with the sats monitor on and oxygen off resulted in a 170+ bpm heart rate and sats steadily dropping to the low 90s until the oxygen was shoved back on and they evened out again. I was still on EAU at this point too. That evening I got moved up to 52, back in the same shitty isolation room as there was literally no other rooms. Apparently there's a lot of CFs in at the moment. I felt bad taking up a bed as they're a lot iller than me and a fair few of them are in and out all the time. Then again, they have freeview, opening windows and fridges in their room. I had an alarm outside my door that wouldn't shut up. The sympathy was limited!! Because of so many being on the ward, I didn't get the CF menu, which meant that evening resulted in the most pitiful baked potato and a tiny pot of grated cheese. Don't eat it all at once(!)

Genuinely, I laughed at this for 20 minutes, expecting it to be a joke. Sadly, it wasn't. So I settled for eating my yoghurt and my jaffa cake bar. The next day wasn't any better food wise either - Im always asleep when they ask me if I want breakfast so I never want anything, and at lunch time, there was literally nothing left, except another baked potato (which I passed on this time, strangely enough) or a sandwich, which I'm not keen on. So I ate my pringles instead. Luckily my dad was already on his way to pick me up and take me home, as my sats were behaving all morning off the O2, and my dr told me to 'stop checking your bloody oxygen saturations' cos he's convinced that when I feel crap, I check them, see a low number and panic myself. That's not true, because I know they're low before I even check them, and I don't check them constantly. I didn't bother arguing this though. The sats monitor has been put away now anyway, haha!!

Anyway, yes, I'm out again and determined to stay out, as that place drives me a little bit insane. Plus, the nurses give evils to people when they leave 30 mins after visiting time is over, which is a bit over the top but what can you do! At the moment, I'm still being too lazy to organise (or contact anyone about...) my work experience, and I'm currently debating on whether or not I should go on the London trip with college at the end of Jan - we had a vote and people seemed to prefer London to abroad, cos they're boring fucks, so London it is, and it'll be 4 days full of traveling there, and back (which isn't going to be fun if its a coach, I think it takes at least 6 hours one way) and the rest of the days filled with walking around galleries and various other crap art places, which I actually HATE! I wanted to go abroad and get cool pictures. I've been to london before, I've done all that stuff, and I avoided the galleries the first time for a reason! Plus, this suggests that there's going to be a lot of walking, possibly a fair amount of stairs. Not sure if I'm prepared to pay £125 to exhaust myself, and I've got to hand the deposit in by Tuesday so it's decision time!!

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...