Thursday, 30 April 2009

Update on moi.

Right then. I'm feeling a million times better than I was a week ago. There's still some pain at the base of my right lung when I cough or breath deeply, although I'm still on painkillers for another week or so. I've missed a load of school which means I don't get to doss around as much as everyone else in the coming weeks - yes they have written exams and I don't but I have to do the 15 hours of art to do which must be done at school and I have three lots of coursework to hand in, one lot which still isn't finished because I left my draft at school, and the teacher's notes on it were crap in the first place.

I also feel incredibly full after having a McChicken burger and a strawberry milkshake from McDonald's. Given the fact that my appetite went to a real low recently, I feel that deserves a pat on the back at least.

My O2 sats are still jumping up and down. My high point was yesterday when I got to 97% although it was only for a few seconds. They enjoy pissing me off by going down to 89% and shooting up to 100% when my little sister tries it out. Show off. And my Mum has been phoning up the Doc to try and find out if they want to add any more time onto the IVs I already have just to be sure that I'll be OK when they finish. After several attempts and only successfully yakking onto his secretary, eventually they phone back and it turns out he does agree, and that'll mean a full three weeks of IVs in total. I don't think I've ever been on three weeks before, so I guess this is a bit of progression poking it's nose in? Although I would have preferred the big 'take care of yourself better' whack in the face to come along without having to get ill. Although that's basically expecting to wake up and find that my room is magically spic and span, and not covered in a load of clothes that need a trip down to the washing machine.

Sitting around at home watching TV surely beats having to sit around at hospital, but I swear, if one more person on the 'Jeremy Kyle Show' says 'Well, at the end of the day...' I could quite possibly scream. Its an old and worn phrase on that show, and each and every idiot seems to think they can sound smart, civil or diplomatic by saying it. And they don't. And half the time I wish I had the energy to chuck my shoe at the screen, but then I realise its probably not a good idea. Whilst I was at the hospital, I couldn't be bothered to shell out an arm and a leg just to watch a few hours of crap TV without subtitles, so I made do with a book. That book was 'Harry potter and the goblet of fire'. Have I mentioned I'm a complete nerd when it comes to books? Anyhow, I finished that book and moved onto '...Order of the Phoenix' and I kept on getting really tired whenever I read it, which didn't prove good as I was told to do my own IVs (and I'm still annoyed about that part). Overall, this means I'm very happy that I was released within a day as there's nothing you can do much with pleurisy other than complain, take painkillers and beg the antibiotics to work. Mainly as I have plenty of crap TV to watch and my Mum and Dad are perfectly happy to do my IVs for me, and I think its especially cruel to ask a patient to do their own IVs. I can do my own when I have the energy, and last week (and most of this week) I just didn't.

Oh and also, I thought the physiotherapist was supposed to come along when you're on the ward and force you to do physio. Well, they didn't. Maybe they didn't know I had CF (which would make the management of the patients a bit piss-poor) or maybe they didn't even bother with the ward. Which would be a bit ridiculous considering that it was a ward for people with respiratory illnesses. I saw my usual physiotherapist although she only stopped for 5 minutes like every other Doc did, to check up on me and (in her case) check what kind of method of physio I was doing whilst I had a bugger of an infection.

Speaking of which, my method of physio... I've ditched the acapella as it just seems to jiggle my throat. It gives you the feeling that you have a turkey neck, when you don't. So I've swapped back to the PEP mask. I dug it out, and it was covered in an inch of dust, so after a pretty vigorous cycle in the dishwasher, it was clean once again and ready for use. And against my better judgement, it works. At least to some amount to which the acapella never did. And it can help control the gaspy breaths that I seem to have come across since last Thursday. Y'know, when you try and breath in, and you seem to just make a gaspy noise and feel your lungs tightening rather than bringing in air.

So, in conclusion, pleurisy sucks, but for now, I seem to be kicking it on its arse thanks to a nice combination of IVs and painkillers that do the job!

Oh and... I'm sick of people whining over MSN or facebook claiming to have swine flu. Cuz seriously, if they did, I doubt they'd be near a computer. So before you claim to have it, dude, think it through.

Friday, 24 April 2009

Live, from ward 52.

Well, maybe not live, seeing as I was released a few hours ago. But the two days I spent on that ward were... boring. It wasn't all just lying in bed and demanding pain killers, I had an ultrasound (twice, as I messed the first one having eaten before) to look for my gall bladder and an x-ray, plenty of blood taken from my arm and the mandatory, how to loose your dignity in 10 seconds MRSA test.

The ultrasound was to look and see what my gall bladder was up to - it was suspected that the pain I had could have been caused from gall stones. My Doc later said that there were no gall stones, and my gall bladder is just a slushy mess from having CF. What was/is wrong with me, is pleurisy (I knew it!) which has been a painful little fucker for the past 10 days. It reached unbelievable pain on Thursday, so I'll walk you through the fun parts

Thursday morning, getting everything ready for school, my Dad asks if I'm alright to go, seeing as I was knackered after walking the short 2 minute walk from the bus stop to home after school yesterday, and I thought I was OK, but realised that as Thursday is my only full day of the week with no frees, my Dad said I should stay off for the sake of not getting any worse. So I go back to my room and watch some TV, and 30 minutes later, I'm in excruciating pain and can bearly breathe - my Mum calls the hospital and they say to bring me straight in, and to pack a bag in case the Doc says to stay in. We checked my sats on my own sat monitor, they said 89. Frankly that's high for what I felt like. I had some paracetamol (I have no idea why I took it, as I knew it didn't work on my pain but I needed to try something) whilst my Mum packed my bag and I sat on my bed looking pathetic (and apparently a little bit grey).

We got to the hospital and waited for a bed, and when they finally found my hospital folder, the Lady Doc came along, prescribed painkillers, and some codeine or something like that. There was also something else, which was a 'once only' tablet, and knowing me, I've forgotten what it was called. Anyhoo, these worked on taking the edge off pain (it seems to be impossible to get rid of it completely) Then I have all these tests and after everything, The Doc comes along and says 'Yeah, its pleurisy'. Fun. I spent most of the day either being taken to the x-ray/ultrasound dept via wheelchair or just sitting in bed. I was on a bay, which meant there were 5 other beds, and its kinda scary to see 4-5 older people with barely enough energy to sit up or talk.

I was eventually moved to a cubicle about 11pm and as the nurses were busy, they asked if I could do my own IVs and I said yes. I later regretted that as the intermates took their sweet time and I kept falling asleep and then having to wake up and finish the IVs. The food was OK though (Isn't that shocking!) and I actually got two dinners as a CF option. Even though I didn't eat it all it was nice to have the extra potato things and extra dessert and stuff. My sats were quite disobedient and only once went up to 94, and then hung around 90-92 for every other reading, but I wasn't deemed oxygen starved enough to need O2, which in a way is handy, as the masks are too big and the nose ones don't sit round my ears properly as these silly hearing aids kinda take up all the room. Anyhow, I'm better now, armed with plenty of painkillers, new doses of ursodeoxycholic acid and managed to leave my Tobi in the hospital fridge.

Its been an interesting few days.

Tuesday, 21 April 2009

Oh the pain.

I'm in mega mega pain.

Its in the same place I mentioned last post, down my right lung at the back and across the side. E-v-e-r-y-t-i-m-e I breathe. Its sharp and tight and feels like my lungs are screaming in protest of me taking another breath. I went to the hospital for my appointment today, as we moved it forward from next Tuesday. My IVs were started and the Doc peered at me as I explained that this majorly hurts and for some effing reason neither paracetamol nor ibuprofen works. And its been like this non stop (with no exaggeration) since last Tuesday.

I don't even care that the IVs were put into two intermates. Ceftazadime and Colostin. Each in a (normal sized) bubble of its own which means that IVs will take the minimum of an hour to complete. But if it gets me better, I don't fucking care. I really don't, I just want to be able to breathe normally again without having to gasp in pain every 2 seconds (which hurts more). My sats are hopping through 86 to 95 and that's just not normal for me. My PFTs dropped (although I don't know how much exactly till I get the letter) and took me forever to complete. But the technician lady was incredibly kind. I also have to get a chest x-ray at my next appointment (8th may) since I haven't had one since January 2008.

My sats ping-ponging between high 80's and low 90's is severely pissing me off as I'm freaked out and quite clearly not doing OK. Add this to the fact that I have deadlines for coursework (luckily two out of three coursework units are finished) this week and an art exam next week, which will be over 3 days. And I don't even have my design ideas of what I'm gonna make. Plus a nice big display on the art wall that each art 6th former gets to make. And I'm determined to make one this year as I was too ill last year to make one.

At least next year, if things start to go down the pot at the same time as this and last year, I'll only be doing an art course on Saturdays, leaving me the whole week to be all manic about physio and the like. Although it would be nice to have a job too. I just have to learn NOT TO RUN MYSELF DOWN. Will someone please yell that at me? Cuz I need it, and all I can think is that I just don't have the time to be ill. If this was happening in two weeks time, rather than now, it'd be fine, seeing as my coursework and art will be over and I'll just be dossing around at school, having a laugh, whilst everyone else tears out their eyes revising for exams. Thankfully, I've got no actual exams this June. I obviously won't rub it in everyone's faces when they're stressed to the point of screaming, but I will smile to myself knowing that this time, I get a break.

Friday, 17 April 2009

The infection section.

I think I have another chest infection. I have officially lost count of the ones I have. So, anyway, the past few days, my right lung hurts when I breath (Or hiccup, oddly enough). Its more or less across my back, starting from the base of my neck to the last couple of ribs, and goes across to my side as well. There's nothing I can really do. I've just finished a 15 day course of Cipro, so I always find it weird how I get another infection whilst actually on antibiotics, but its an inevitable thing that you just have to get used to. I'll have to remember to tell the Doc when I go to clinic though, as no one deemed lung pain important enough to phone up and ask about it. Oh, and paracetamol didn't help, so I'm basically a calamity.

I'm coughing loads too which is confusing considering the Cipro, to the point of being out of breath, which I hate, although I did muster enough energy to do a full on assault to the majority of the floors in the house with the vacuum, because my lovely squishy pillow burst, and it was full of minuscule (and very static) polystyrene balls, which I also happen to be sitting in as the little buggers get everywhere, and I couldn't be bothered to bring out the hoover again.

The crispy cakes lasted all of a few days, and were eaten at a surprising speed, so I made another batch of 30 which actually means I've made 96 in total, and I'll probably be making a lot more. I just never seem to like eating plain chocolate which would mean my Easter eggs sit and rot, or I make crispy cakes. I think the answer is pretty obvious.

Anyhow, so its T-minus 11 days and counting till my next IVs so hopefully the supposed infection will get the proverbial shit knocked out of it, although I am quite upset at the prospect of needing IVs so soon after my previous ones. It was only 4 weeks ago that the two week course of IVs finished and I usually have IVs every 3 months, possibly longer (The irony is that it was the longest I had gone without IVs when I needed them. It had been 4 months, and I was hoping these IVs would help me keep to the idea of not needing more until 4+ months again, when everything just hits the fan and you're left thinking 'Shit, things are quite bad' and scheduling IVs when you're only 2 weeks free of them. And that's not what you want to or what you usually think about.

And thanks to Bree, I'm potentially the proud owner of half of Henry Cavill (Bree of course, gets the other half).

Monday, 13 April 2009


Yum. I obviously have no understanding of the word 'excessive', because making 66 crispy cakes is totally normal. Right?

I'm going to a party on Saturday, yay! One thing I'm worrying about this party is the fact that as my friend lives in the middle of nowhere, everyone tends stay overnight, which means tents. Which means sleeping flat on the ground. Which means me coughing until someone cracks and suffocates me. This'll be interesting...

In other boring-ness, my appetite. I'm one of those picky people who gets hungry and yet there's nothing you can think to eat, which proves a problem as if you miss the meal, you're bound to loose weight and its not something I'm aiming at right now. Plus the fact that if I miraculously find something I want, it just sits there and I don't really want it anymore. Its driving me insane so I really really need to find some heavily calorific food, and to also build up my appetite again. The last thing I want is to give a reason to the dietitian to say 'I told you so' or even suggest a feeding tube again (which wouldn't go down lightly which is why I'm trying to gain weight for the safety of everyone at clinic.)

I'm feeling quite antsy about the make-a-wish thing. Tres exciting, I know :D. So obviously I can't wait till they've decided and when the whole thing happens. I think they may have said that its at least a month to contact the charity and for them to decide, so maybe it'll be all decided by the time the summer holidays start (Although mine start early due to my last ever year at school and we all leave a month before everyone else, haha!)

Thursday, 9 April 2009

Prophecy girl.

Right. On to the good stuff which I'm sure is the only reason you're paying attention right now. Make-a-wish. Like I mentioned last time, you make 3 wishes. I had only thought of one originally (A shopping spree :D) so choosing something for the other two was difficult, and whilst those ideas were great, the shopping one was defiantly my number one idea. (And hopefully I'm not coming off too brat like here.) The two women who came over to ask me stuff were really nice and funny, which made it basically like a girly chat, even though my parents were sitting right there. Like I said, I liked the idea of shopping in Oxford street and gave two other ideas which everyone helped with, and they'll send the info off to the charity. They try and get you wish number 1, although sometimes they have to do an alternate wish. I'm so giddy right now.

And now we get to the Cipro part. I think it may be doing something to my appetite again. (Nooo! *Cries, wails, and gulps down several of my special 'Fortijuice' drinks in the attempt to become the lard arse I really should be*). Nearer the beginning of the Cipro course (In other words, my previous post) I said I was coughing, possibly even more (Is that possible?!) and one morning, whilst choking for breath, half awake, I felt like something was constricting my breathing, like having an elephant sitting on my chest, as I so aptly put it.

So far, the Cipro has worked a little bit, but my lungs are ignorant little shits who refuse to listen and continue to make me cough till my eyes bug out and I've gone purple. But at least there's still about 6-7 days left. I'd give you a more accurate number, but I'm comfortable and all my medication sits happily on the kitchen bench. All crammed together and kept tidy by a lid-less lock-n-lock box. The rest of my medicine stuff (Mainly re-fills and bits and bobs for my IVs) sits on the top shelf in a cupboard, filling another box, similar to the size of what you'd put a cake in, or maybe just an over-sized lunch box. That, my friends, is the down-low of my medication storage. Oh wait... there's also half a cupboard full of Colomycin (For my nebuliser) and my big box of Tobi (Also my Nebuliser) hogs one of the sections in the fridge, which my Fortijuice bottles grudgingly share.

In 3 weeks it'll be IV time again. I wish that woman Doc had listened to me in the first place. I feel like the IVs I've just had (and didn't work) just put a load of strain on my body for no reason. If you remember about the part where I got 'Flu-like symptoms' from the little bugger that was Meropenem. Actually 'little' is a bit of an understatement if you saw that picture of the 'bubble' of medicine.

There was something I wanted to mention. I have a medical alert necklace (As bracelets just fall right off my stupidly skinny wrists). I've had it for a couple of years but I've never had it engraved, I've never got round to it and either way, I have no idea what to put. Or who to go to. Who does engraving for medical alert bracelets? The watch repair and key maker in the shopping centre? I really should start wearing it though. It'd be pretty scary if something happened and I wasn't with anyone who knew about my CF.

And finally... Is it strange that I've had one or two transplant dreams, even though lung transplant hasn't been mentioned as a course of action for the time being? I know my lungs are doing better than those who are listed (How the hell do you do it everyday?!) so *touch wood* it won't be mentioned for a long time. But I have read so many stories and can't help but wonder, what it would be like to breath, run and laugh and not get out of breath or worry about a coughing fit. In my dream, I've already had the transplant and woken up, and I'm able to walk around. So I go on a walk with one of my oldest friends, just around the hospital, and all of a sudden I start crying, realising that we've been walking for about 30 minutes and not once have I coughed or gotten short of breath. It just seemed so real and all I can hope is that its one of those freaky prophetic dreams about the future. Cause if it happened, that would be cool. Actually, probably verging beyond awesome.

I have a friend who is completely into the whole horoscopes and how dreams have meanings thing, so I told her about the dream and we went on a dream meanings site to find out if it meant anything. Do you know what it said... 'To dream that you have an organ transplant suggests that an aspect of yourself is worn out.' Well I never(!) It didn't specify any organs, so I tried 'Lungs' and found this... 'To see lungs in your dream, symbolize insight, creativity, and inspiration. Alternatively, lungs may indicate a stressful situation and refer to a relationship/situation in which you feel suffocated.' Which proceeded to give me the nightmarish mental image of people dreaming about a giant pair of lungs running about.

Sometimes I just don't think I'm normal.

Sunday, 5 April 2009

Moments of win.

I went to clinic on Wednesday, and I saw the Doctor I prefer (Ken Lerner, anyone?) and, I have to say, that guy is defiantly a great doctor. Straight away, he figured that meropenem hadn't worked and that I need more IVs, although not right away. So I'm on a 15 day course of cipro (Yeah, again) in the hopes that it will help, and then I get more IVs on the 28th April. Anything to keep back the bucket load of infections that have a party in my lungs everyday.

Oh, I've just remembered that the last time I hit over 80% for PFTs was during October/November, and I was halfway through a course of Cipro (Well, that and the MRSA tablets, although I don't think they actually contributed in any way to the condition of my lungs). So maybe if I don't bitch about Cipro, it'll work again, and I'll be on a massive 'I've just done bloody awesome' high. This had better be soon too, as the last few nights I've been coughing non-stop, and feeling like theres an elephant on my chest. Okey dokey St. Cipro. Feel free to whack away at any pseudomonas germs or whatever else I have in there that gets in your merry way. Give 'em hell from me too.

Also, at clinic I noticed that the other dr had written a, well, a novel to be honest, in my hospital book. I never got round to reading it, (what is it with the Doctors and their possessiveness of my hospital book? It's about me surely I should be the one who is allowed to read it?) But I did read the word 'attitude'. Fantastic. I'm trying really, really hard. I'm trying not to be so cheeky (Although it comes so easily!) and I'm trying to be kinder and everything. In health and social care, as part of our coursework, we needed to do this 'peer feedback' exercise, where you switch around writing notes on each other's skills and so on, like organisation, empathy, and presentation skills. On one of the skills (can't remember which though) A friend had written that I'm not cheeky or rude to classmates or my teachers, but another friend had written next to that 'Hear hear!' which hit me a bit, even though it was a bit of a joke, not meant to be taken seriously. That's how I'm going to be remembered, the small, blonde, radgy lass. Bright side, I can work on it so that people I meet at college will know the less cheeky me. I have got to stop using my hearing as an excuse, even if its how it started. (Basically, if you loose your hearing when you're around 11, people are gonna take the piss out of you when all of a sudden you can't hear, and in a way of defence, I started basically being a bitch.)

Nothing else happened at clinic. I think I lost weight again though, so anyone who knows any decent food to eat, with plenty of protein and fat and all that jazz, I'd love ideas, cuz no matter how hard I try, that damn scale seems to have it in for me. If you want an actual idea of what I weigh, its about 6st 11 pounds. Given the fact that I'm 5'1'' and 17, I'm sitting in between the 'underweight' and 'OK weight' on the little coloured weight chart. I'm hoping any weight I gain goes straight to places like my wrists/arms and legs which are ridiculously boney.

One last thing to say, and I'm done rambling. I can't remember if I've mentioned this at all, but where else to start then from the beginning? A couple of months ago I found out that people with CF are actually eligible for a Make-A-Wish, which is available for sick kids aged 3-17. Seeing as I'm 18 in 4 months, I thought it'd be worth filling in a form to see if I'm 'ill enough' (Some kids with CF have been known to have the reply 'not at the moment cause you're technically too healthy. One fantastic thing about a progressive disease ey?!) Aaaaaaaaaaanyway. So I filled in the form, they contacted my Doc to check I'm as ill as I am, and on Friday, my dad got a call saying that they'll be coming over on Wednesday, and 'can't leave the house till I've made 3 wishes' (Which is literally what they said. Oh, and it also means that I passed the whole interrogation on my 'health' too.) This is presumably because some kids may ask for something that just isn't possible. Bless 'em, I've read stories of some kids hoping to get a guardian angel or something along those lines. I never wanted to ask for something complicated. My first idea was a shopping spree, and hell, I don't even mind if its just at my local shopping centre. I've never been on a shopping spree, just for me, cause when ever we went shopping, it would never be a kind of 'I've got loads of cash to blow' kind of thing. And either way, my younger sister would always get more, mainly cause I'm just too picky. (Actually, one of the reasons why I chose 'shopping spree' as a good idea was because that way I'd be able to buy something for my sisters too, so they wouldn't feel left out. Otherwise I'd probably feel guilty or greedy, or something else along those lines.)

Maybe after all that, when I do the great strides/5k? one day that I'd promised myself I'd do (Obviously for CF) maybe I'll do another one for Make-a-wish.

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...