Saturday, 17 November 2012

Extra Large

Clinic went well today (despite the long wait at the beginning), so here's a wee summary!

Lung function is about the same as clinic 6 weeks ago - 56% FEV1 and 80% FVC. I always write down both because most of the time people just say one and I have absolutely no clue which one they're referring to! FEV1 is how much you blow in the first second, and is a good indicator of how your airways are - ie tight etc. FVC is the capacity - so 80% of my lungs are working! I know CF guys will know all this, but for those not in this weird and wonderful little world that's the low down. I'm very chuffed about the capacity - it seems to be getting increasingly better which is quite odd for CF. Physio said it's definitely the cycling. 56% is apparently OK for me (last year was averaging down in the mid 40's), but I like to have the two readings at the most 20% apart... there's a little bit of OCD creeping in...! (You can see how much my FVC has improved then too... the 20% difference I used to have would make that reading in the 60's!) So i'm going to give these fickle, sensitive airways a talking to and make them chill out. 

Weight was up! By 2kg! In 6 weeks! I really have no idea how that happened since my appetite has fluctuated drastically over the last few weeks, spending more time on the 'non-existant-side' rather than the 'gimme-the-bloody-chocolate-cake-side'. If I think logically, every time my appetite has decided to show up I make the most of it, and shove anything fatty and calorific down my gob. A couple of days ago, for example, I fried up a whole tin of spam. A whole tin. Thats just over 1000 calories, with the oil. I am not kidding one little bit. And then I heated up some pasta and put lots of butter and a bit of cheese and ketchup on it. But even with calorific monstrosities such as that, I didn't think it'd make up for all the days I haven't been eating much at all. *All hail the spam*. 

The doc then flicked through my notes and said that this time last year, I was 43kg. 9kg in a year! That's just under 1 1/2 stone! Again, mega happy me! I do think a chunk of that is liver + spleen, we guess 3 or 4 kilos, which is quite daunting. I've never physically noticed any weight gain (like ever), however last week I unearthed a pair of jeans I used to wear all the time at uni and HELLO couldn't even fit them over my leg! I thought they had shrunk and swore at them for being so crap, before flinging them across the room with a rather annoying melodramatic flair  ("Oh! my trusty jeans how could you do this to me!"), but now I take it all back. It was me, not them! *All blame the spam*

We then had a delightful little chat about bowel habits and gastrograffin. I'll spare you the details. (But gastrograffin was the reason I had to wait at pharmacy for 45 minutes when i'd rather of been having a McDonalds. I got the chicken nuggets eventually, thank fuck.)

So a pretty productive check-up. Not productive in a phlegmy sort of way, dry as a bone I was. Have to do a cough swab almost every time (!) (You want my gunk? You not getting my gunk!) I hate mucus. Eurgh.

Tuesday, 13 November 2012

Darkness Reigns

Winter is most definitely here. In the dead of night, through the crack in my blind, I can see the windows seeped in moisture as the bitter air clings to the warmth within. By the time I get up (which every day seems to be becoming later and later) the house is bathed in heat as the heating has had time to fill all the rooms - except mine, where my radiator stays fixed on zero. I don't like the cold nights, but equally I don't like the heat. In the morning my nose is dry, my chest is tight, my skin is parched, and my head is screaming. So instead I opt for the cool - which with it brings a loose cough and a clear head. Up until a week ago I had my fan on every night, which my mum didn't exactly like the idea of. Mums eh. But it shifted that morning build up of gunk in one fell swoop! Fantastic. Of course, despite my hankering for this chill, you'll still find me cocooned within my duvet nestled between a big bundle of warm pillows, which suits this hibernation chic i'm rocking these days.

I'm only up for a few hours before it starts to get dark. Normally with these short dark days comes that equally as dark and depressing feeling, as if you've been shot down before your day has even begun - clipped before you can bloom, truncated before you've reached the good bit. But this year it doesn't bug me too much. Firstly, i'm not exactly doing anything that involves the outside - i'm not trekking home from school, from work or to anywhere. I haven't gone to the pub in ages, or well, anywhere for that matter that involves an insane amount of trudging through the dark and the damp. I don't need to and I don't want to. Secondly, I have a flippant hope my transplant call will come soon*, so then the majority of these few months where darkness reigns will be spent in a timeless bubble, where the structure of days and the steady logic of the sun rising and setting will become obsolete. There'll be a lot of darkness I imagine, whether that be in sleep, in curtained off bays, in operating theatres, in darkened rooms filled with machines. It would be nice to re-emerge out of my cocoon into a season filled with sunlight - a sunlight that extends and grows day by day as if the majority of winter didn't even happen. Miss out a chunk of the endless months of black and rejoin humanity just as everyone else is thawing out their butterfly wings too. Mine'll be super shiny.

Health wise, things are pretty stable. My chest is continuing to behave - I have odd days where my cough increases, feel a little run down and I feel like i'm on the brink of developing something potentially nasty and annoying, but a boost of calories, rest and lots of nebs luckily keeps things in check. Liv the liver has also been pretty good and steady for a while, though the last few days a series of little things have happened that independent of one another I wouldn't be concerned about, but all together make me think my liver is taking another wee tumble. I think it's annoyed that I said cauliflower is disgusting. Given it looks like a cauliflower. Sensitive, pathetic soul. I'll spare you the details, but i've got Addenbrookes on to it, who hopefully will say it's me being sensitive, not Liv!

Now i'm going to curl up next to my cat and have a nap. She has pancreas problems too, so we can bitch about that and dream of sparkly new pancreases (and livers) together.

*I know I always write 'hope my call will come soon', and it's getting very annoying. But surely one of these days that'll actually come true!