Control, ALT, delete

YOUR OWN, PERSONAL, JESUS.


Clinic. I just went and blew my best ever blow in recent history. 78 and 60 percent! GO FUCKING ME. I have no doubt it's because of my super speedy, super dooper podhaler, as well as my cycle rides. I feel like I own the world! Or have it under my thumb - it's fab feeling so in control of these puffers. The world is mine mwahahaha. Weight up too, is there anything that can stop me?!

Well, yes. Is the simple answer. And surprise surprise it's called MY LIVER.

(Before I go on, just want to add I have these new fantastic headphones, and Absolute are blasting out some TUUUNES! (Hence the Depeche Mode up top, I wasn't being all psycho doolally...) Edwin Collins always gets me strutting ma stuff, like that M&S ad. Even though I don't have much 'stuff' to 'strut'. And i'm sitting in bed. But you get me.)

SO, yes, back to the dreaded liver. One of the levels (ALT) was about 5 or something times higher than it's ever been (and it's normally pretty darn high) - I saw on the graph this relatively tame jagged line, then BOOM it shoots up like Mt. Everest amongst a horizon of Notting Hills. Oral antibiotics have now been stopped for at least 2 weeks to take as much stress off the poor thing (poor? evil? I'm conflicted) as possible.

Middle column = my blood results.  Right column = what they should be!

The good thing I suppose is I now have an explanation to all these niggling ailments that have been quietly bombarding me for a week or so. My digestion has been completely awful despite both enzyme and eating habits having not changed at all. I've also been absolutely exhausted. I thought it might have been an iron thing, but as I hadn't lost any great quantities of blood recently (even the coughing up of blood has subsided a little) it remained a mystery. The last few days I haven't been able to get out of bed - my alarm has been put on sleep and reset for an hour later more times than I can count! Not even in the days of staying up all night, galavanting round London in some drunken stupor and jiving my butt off in Gaz's rockin' blues for hours etc etc have I been so utterly shattered. It sucks.

I now hope my lungs don't turn crap without my trusty bug killing crime fighting super saviour duo of doxycycline and azithromycin... but I suppose with them being rather sparkly it's quite a good time to take a breather. It'll be like a little holiday ! Just the podhaler! NICE. Every cloud eh.

I will try drag myself out for a cycle later, at least to get some chippies, but at the moment I feel like i'm caught between the world of the living and the world of sleep. No amount of caffeine has shaken me out of this tedious little half-life, proper 'death warmed up' shizzle. But if anything can lure me (albeit partially) out from this daze, it's gonna be a big bag of hot yummy salty fatty chips!

No reason for this pic, it just makes me happy.
And reminds me to buy more... ooee

Redheads kicking butt

I'm not going to review every single film I see, but this one definitely deserves a mention! I went to see Brave with my mum (yeah, my mum. It's a very mummy/daughtery film), because being a redhead, how could I not. I want to support Disney Pixar's first ever female protagonist. First ever! I think it's ludicrous how Pixar, after what, at least 10 years(?) of fantastic films, have never had a female lead. Not very good. Big tut tuts. So, in this epic week of girl power (SPICE GIRLS FTW), Merida takes pride of place. And how perfect to have a lead who is a fiery, independent, beautiful redhead - about bloody time!

No way! I shoot arrows too!

What I was most moved by (yes moved, I was very emotional), was how unlike Disney princesses of yesteryear, Merida didn't need a prince. There was a happy ending, but that happy ending didn't revolve around her finding true love, getting married and all that traditional frankly outdated palaver. It was all about breaking tradition and controlling your own destiny - whatever you want that destiny to be. I can't help but feel a swell of optimism of how this young generation of little girls will grow up with role models like this - head strong, determined, courageous and independent, rather than the majority of princesses we were all brought up idolising - ones who, for them, only desired to find their Prince Charming. And not Princesses who are always pristine, neat and practically perfect in every way, with skin as white as snow, lips as red as roses... no, princesses with wild unruly hair that matches the untameable soul inside - a rugged natural beauty that stems as much from the outside shimmer as it does from an infectious spark within. I didn't need the 3D goggles to gauge how much depth Merida had - a multi-faceted diamond of a lass inside and out (the 'out' thanks to the incredible animators, seriously, wow). Did I mention she was a redhead?! Not blonde, not brunette, a redhead! Yes yes, there was Ariel, but c'mon, her hair was totally dyed. This was ginge. True ginge. I was bursting with pride!

As lovely Merida was big on escaping fate, and controlling her own destiny, I began to realise how far away from my normal self this transplant situation has made me. Normally, (blowing my own trumpet here) i'm quite similar to Merida (yay!) - I believe if you want something to happen you go out and you get the oil and you get those cogs moving, not relying on some external power to decide what will happen for you. But waiting for a transplant is different - you have no other option but to sit and wait. It's a disconcerting feeling of powerlessness. Yet on the other hand, because there is really nothing I can do to control what is happening, I can indulge in this guilty pleasure of pure passivity and let archaic and somewhat alien notions of fate and magic play with my thoughts (in case you haven't realised!). It's a bit of a treat. I'll chill out in this dreamy passive timeless frozen (almost)care-free floating bubble humming 'que sera sera' until my gaudy pink mobile rings and bursts it. Then afterwards back to reality i'll go, fighting fit and ready to shoot fate and destiny down with a well aimed arrow. I'll be so fed up of doing jack shit that i'll probably like, marry a prin... I mean, hunt down a job and a career! No rush though. This is kind of a biggie.

But yes, I want more princesses like her. We need more princesses, heroines, protagonists, role models like her. Pixar, you dun good. And it was funny too. But i'm never going to a PG film at the cinema again. So many crying babies and talking kids and kids eating and kids crying and mums shushing... argh. Kids.


I also want to mention my Podhaler. I've been using it nearly three weeks now, and it's really been quite life-changing. It takes a bit of getting used to because the powder can be really harsh on the back of the throat and makes me cough like crazy. But it's so quick - 5 mins tops, and because it's so speedy speedy, I find I actually take my Tobi much more that I used to. Before, with the neb, I used to sometimes not do it especially if there was no clean nebuliser bits or was in a rush to go somewhere, it just took so much time and effort. But that's not even an issue now, so i've hardly missed a single dose! To avoid the tickle and the coughing I often take a much more gentle breath in, which just means I end up having to take 3 inhalations per capsule rather than two to get all the powder. But that's no biggie.

If you CFers aren't too hot at always taking your nebs, I would recommend asking about and trying to get the podhaler - you might find you're more likely to take your meds more often. I'm always quite compliant with taking my meds, but we all have our off moments where we just can't be bloody arsed. I find I now have less of those, which both my conscience and i'm sure my lungs are very pleased about! I have it on good authority that my lungs are happy, as my lung functions at my 2 weekly hospital appointments (I know, 2 weekly, so lame) continue to get better! That is why I now kick butt, just like my on-screen doppelganger.

Clinic, podhaler, and CAKE

Just typical. The day I have clinic, I have the WORST COUGH EVER. Today, fine. Brilliant. Nothing there. Clear as a mountain spring. Well, sort of. But yesterday I was all a rumbling-and-a-wheezing-and-a-gunky-and-a-spluttering. Did a terrible lung function (40% and 60% PAH, normally 60% and 75%), sats were 92 (they're always 98) and, well, it was a disaster. I saw my favourite consultant Dr Bilton, who basically got me on the road to liver transplant a few years ago, and who's buddies with all the team up at Addenbrookes. I told her how Chelsea and Westminster 'stole' my DNAase, and haven't had any for 2 weeks, but that i'm finally able to collect it from my chemist tomorrow (today). AND how I stupidly (not so stupidly if it's shifting shtuff) had a hypertonic saline (yuk) which has just unearthed a whole heap of hidden monsters from the deep, and that are refusing to calm the fuck down. Not in those words. She's given me 5 days to get better with Cipro too, otherwise.... IVs. Oh how my heart sank. Basically, if I have an inpatient stay because of a bad chest and IVs, i'm taken off the list. And today i've hit the 3 month milestone. I do NOT want to be off the list at this moment in time. I've hit the average wait time! Equally, I don't want to go ahead with a transplant if i'm run down because that wouldn't be wise at all, so my only option is to work my boney butt off to kick this cough. A cough that today, seems to be non-existent... Still, knowing coughs, it's probably lurking in the depths, fooling me into believing it's gone, when in fact it'll pounce when I least expect it and come and bite me in the skinny bum of previous sentence.

Also, I got my tobi podhaler! During my trial run yesterday it made me cough like hell - tobi through the eflow is awful (that's why I use my fat old machine instead), but this is the same potent powdery strength in one inhalation. I say one, but actually you do 8 breaths - 2 breaths for every capsule. So it's not quite as quick as a puff of a blue or red puffer (or brown or green - I know they exist), but still, no washing! No sterilizing! No fridge! No nebuliser! AND they deliver it every month to your home! Incredible. For those not in the know, it means about an hour kicked off my daily routine. GET IN. My dilemma now is whether I continue with my colomycin neb until the end of the month, or succumb to my excitement and start the podhaler NOW! I think I might wait. I'm a good girl you see... sort of. The thing is, now it looks like I leave a sex toy round my house, and i'm totally nonchalant about it. Good girl gone kinky.

Pictured on bed. See what I did there?!

Today I have a dead arm as a whole load of gloopy vitamin A was injected into my poor wee arm as well yesterday. It's a painful jab because of it's thick consistency - you can feel it just sitting under your skin like a fat man at McDonalds, knowing he should probably get on with his day, but being too fat to actually move anywhere. Or anywhere fast, at least. Eventually the orange flubber vitamin disperses and the acute achey pain subsides, but you're left for at least a whole day with a dull ache - a disturbing memory of sludgy fat man at Maccy D's and his jiggling fat rolls. But at least things will be brighter from now on. Literally. Night blindness is a frickin' nuisance. Everything looks dark and orange. You can't walk about at night, you can't see stars, you can't see much to be honest!

Now i'm off to finish my Victoria sponge cake. I didn't make it, it's from Sainsbury's. But it's taste the difference so I like to think it's been lovingly made. That counts as working hard to fight an invisible cough, right?