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?

Quickie

Just a quickie post - off to the Brompton tomorrow afternoon (Friday) for what is technically my 'annual review clinic visit' thing, even though I saw the docs when I had my annual review about 6 weeks ago.

I'm hoping they might start me on some osteoperosis drugs - my bone density scan came back pretty shocking - my poor brittle bones! Given they hadn't booked me for a scan in about 4 years i'm quite annoyed - they could have given me something to prevent this!

I also really want to ask about this Tobi inhaler - I nebulise Tobi twice a day alternating with colomycin every month, and even though the half an hour nebuliser lulls me to sleep every time (pretty blissful), it would be fan-bloody-tastic just to have an inhaler! I think there might be a colomycin one too...!

Pretty sure my weight has plummeted during this rocky two weeks, and I even have some sort of feverish thing which has demolished my appetite. It's been horrid - since monday i've been freezing cold, boiling hot, headachey, sleepy, and no appetite. I'm on extra cipro and I very rarely tend to become feverish with an infection so i'm hoping it ISN'T an infection... maybe I caught old granny germs from Chelsea and West. I have all my fingers and toesies crossed that they won't keep me in for IV's because that would suck balls.

But i'll put up a cool, calm and collected fight - Laura style - I'll talk steel if they want me in while maintaining this charming and polite exterior. Bat some eyelashes too. Maybe? At least i'll make them wait until my 3 weeks of cipro is up - buy me some time while I frantically beat all the gunk outta me and spend every meal time at McDonalds! That should do it.

:-/

I have succumbed

According to this little gadget I have on my google homepage, i've been waiting for a liver and a pancreas (and a little bit of gut - don't forget the gut!) for 49 days. The first 2 weeks flew by, but now it's like time has decided to play a cruel and torturous joke on me and go as slow as it possibly can. This gadget is also telling me it's been 32 days since i've had a McDonalds, which is worrying me. Pretty sure i've never gone that long without a MaccyDs before. At school I used to have McDonalds every day for lunch, even when my whole school was banned (inner city comprehensive. Rowdy bunch). This is one of the perks of having Cystic Fibrosis - you can eat all that good shit and not gain a drop of weight. My mum wrote a letter to the manager, explaining my high calorie dietry needs, and from then on, I was the envy of the whole school. My friends could come with me too - luckily I didn't have to choose between fatty goodness and friends. Though if it came down to it, I just might have chosen lonerville... 

So this waiting game is one of the reasons I have succumbed and started this blog. I spend my days doing nothing. I sleep, watch Home and Away, then Neighbours, then sometimes Law and Order but it gets really hardcore, then sometimes the channel 5 afternoon film. Notoriously always absolute rubbish. But so rubbish, it's really watchable. Just like Will and Kate the Movie. Dotted during this crap fest I eat as much food as I can, and work my way through all the physio and nebs and boring things like that. This lazy lifestyle is actually a pretty good way of making sure I do all my treatments. 

I'm not a fan of going out much these days - my crappy scarred liver and fat spleen have made it so I look pregnant, and have constantly low energy levels. It sucks. I don't go out unless i'm wearing a big baggy jumper, which as the weather is warming up, is making it harder and harder. So I stay home, be good, make sure my chest is tip top to deal with the upcoming transplant, and indulge in guilt-free slobbery. There aren't many times in life where that's acceptable, so i'm making the bloody most out of it. This is also why i'm up at 2 in the morning... I don't need to get up until 1.15, just in time for my Australian soap fest.