All our pesky lungs.

I got released from Addenbrookes last Friday, the 29th March. My last immuno-absoption treatment was on the wednesday, and from the time that last bit of heparin was flushed down my line, I was pestering every nurse and every doctor to get the annoyingly crazy alien probe out of my poor battered neck. I was blissfully distracted by a visit from some friends on thursday, who came bringing KFC, chocolate cake, pressies, and an afternoon of laughs. After they left the nurses obviously had felt left out and came like hawks eyeing up my cake - eyeing, not eating. Only fav nurse Megan got some that evening. The docs then came brandishing the news that my liver was, well, perfect!! No more rejection, levels were just as a normal persons' should be! Line was whipped out and I celebrated all this fantastic news by doing some gentle head rolls. They later informed me that they wanted to keep an eye on me for a few more days, and as my chest was still playing up by producing a shed load of green gunky shit, they were wanting to transfer me to the Brompton. Knowing the Brompton and it's crazy annoying bed situation ("You want a bed do you? Wait 3 weeks."), I knew that to set a date would be an elusive impossible task. The long Easter weekend meant that everything was made a million times harder, not so much for Addenbrookes who seems never to sleep, but for that chest hospital that seems to doze heavily on the weekend, and hibernate on any sort of holiday. Friday morning came, and just near the end of the Hitchcock film I was watching on BBC2 (right near the end, thanks), Dr Allison came in and said I can go. Like, today. Like, now. The Brompt only wanted me to call on tuesday and arrange an outclinic appointment!

Hallelujah!

Of course an 11am 'now' ended up being a half 6 gettaway, but I was escaping! (The fact that I had to return on thursday for clinic was insignificant, I could go home!) 2 and a bit months later I was finally leaving to go home! I left in a glorious sunset that cast a warm orange glow all over the hospital, and as I looked back over the undulating fields at the strong higgledy piggledy giant, it looked like some epic Hollywood hero. Cheerio my Life Improver. Oh but home...! Fluffy cats, proper tea, a duvet, a sofa, lie ins, oh it was heaven. Previously I had been a bit ambiguous about whether I needed creon or not, but as soon as I was home everything in THAT department was perfect. Maybe it was the IVs messing my tum up a bit, maybe it was a slightly pathetic need to be at home. But this was a heavenly discovery. "Then felt I like some watcher of the skies when a new planet swims into his ken..." Yeah Keats again, but he never fails me and I have this shit in my head. "...Or like stout Cortez when with eagle eyes he stared at the Pacific - and all his men looked at each other with a wild surmise - silent, upon a peak in Darien."A revelation - my pancreas works! It does it does it actually does! The Brompton had been doubtful I wouldn't need enzymes, so I had until then been tentative. I was a little shocked - this I think was the first time I thought wow, my life has actually changed. That's 50 tablets off my daily tally! The amount of time I would be in agony, bent double, or sat on the loo regretting forgetting my enzymes or despairing at how on earth I could be getting this wrong, still. Sorry if this is TMI, but CFers know what i'm chatting about.

So as that department was sailing into heavenly waters, the chest department was being tossed into a maelstrom. I couldn't walk up the stairs without having to sit and try and catch my breathe for ages after, and I was producing ever more sticky green gunky crap. I was only on doxycycline and my podhaler - azithromycin to my great despair had been ruled out as it upsets my immunosupressents, so I was only on a minimal amount of antibiotics. As monday (my birthday!) approached, it was just getting silly.

Monday, my birthday, was a day spent at home, watching Ace Ventura, eating cake, and playing with my goodies, and a lovely diner out with the fam. Not very action packed, but I loved it in it's simplicity, chilled-ness, and un-hospital-ness. Un-hospital-ness mostly. I left a message for the CF nurses that night saying how shit I was, and by Tuesday afternoon, I was sat in clinic. By Wednesday afternoon, I had a bed on Foulis ward.

This is where I am now: picc line in, overnight feeds, a concoction of new antibiotics, and the big revelation - a diaphragm that refuses to go down. My left lung had collapsed during my transplant, and had then been blocked up with solidified gunk. Now that gunk has been moving up, the diaphragm is left in this locked position meaning my lung doesn't inflate properly. Bummer. I don't know whats going to happen, I hope it'll start to move. Docs tentatively say yes, mixed with some "it'll take time"s and "we'll see"s. It's the first time i've actually felt like I have a poorly chest - I have a chest condition that's permanent. It's un-nerving. I don't like it. They might try this new Mannitol thing, and I like sugar in any form (icing, caramel, granulated, cubed, inhaled). I also have this saline shisha pipe that I puff on like the caterpillar from Alice in Wonderland. "Wwwwhoo. Aaarrrreee. Yoooooooouuu".

One consolation is that i'm still in the same borough as my humble abode, can see Trellick tower that is the other end of my street, and I know me and my lungs are in safe hands. The Brompton is fab that way. One way it's not fab is that you're surrounded by the occasional moment that you fear the most, those dark heart dropping moments, a death on the ward.

Thursday was one of these days. I had been hoping to pop along to a friend's room that afternoon to say hi - Sam and I had been chatting and messaging on twitter for a long time, and even though I had never met her, you share so many lovely moments and conversations that you feel as if you have made a proper friend. My parents arrived so my plan was regrettably delayed, though reflecting on it, I would never have been allowed. Sadly, I never got to meet Sam. It was a horrible, horrible evening.

Sam had been waiting for a transplant since 2010 but sadly wasn't as lucky as I. It's not fair that by the flippant roll of Fate's dice some are flung into a world of optimism and happiness, and some are left hanging, waiting. I didn't think "why me?" because I know we are all equally entitled to this chance at a new beginning, and it IS just down to sheer luck of that dice. It's just so utterly devastating that her numbers didn't show. So much has been done to raise awareness of organ donation and to get those numbers of donors up, and it has been working - the figures show it, but there'll always be casualties in this tough game and i'm just heartbroken that Sam was one of them. Reading her blog you catch a glimpse of how hard her life had become, and I was in awe at the strength of her character to remain so positive and down-to-earth in the face of such crushing blows. I just hope that if ever i'm in a similar position to her health-wise, that I share that strength. Hell that can't be easy. She is the first i've known to die, and is a stark and shocking reminder of what we're all fighting against. I'll be thinking about her, and husband Luke, for a long long time.

And HELLO if you're reading this and haven't signed up, can there BE a better reason to sign up? I'll even post the link like the pimp I am to make your life easier http://www.organdonation.nhs.uk/ there. Just click it won't you?

Here on the same page you have what fantastic things organ donation can do and what despair seeps from the lack of it. I'm such a lucky gal.  

Update 1/9/13:
I was speaking to Sam's husband Luke yesterday, who told me Sam was a huge fan of Keats and had some of his poetry read at her funeral, including this following section. I would just love to add it here, as it truly is beautiful - one of my favourites, and I can't think of a better way to remember such a gorgeous girly who definitely will never pass into nothingness. This is the first section of Endymion, a fitting goodbye.

A THING of beauty is a joy for ever:
Its loveliness increases; it will never
Pass into nothingness; but still will keep
A bower quiet for us, and a sleep
Full of sweet dreams, and health, and quiet breathing.	5
Therefore, on every morrow, are we wreathing
A flowery band to bind us to the earth,
Spite of despondence, of the inhuman dearth
Of noble natures, of the gloomy days,
Of all the unhealthy and o’er-darkened ways	10
Made for our searching: yes, in spite of all,
Some shape of beauty moves away the pall
From our dark spirits. Such the sun, the moon,
Trees old and young, sprouting a shady boon
For simple sheep; and such are daffodils	15
With the green world they live in; and clear rills
That for themselves a cooling covert make
’Gainst the hot season; the mid forest brake,
Rich with a sprinkling of fair musk-rose blooms:
And such too is the grandeur of the dooms	20
We have imagined for the mighty dead;
All lovely tales that we have heard or read:
An endless fountain of immortal drink,
Pouring unto us from the heaven’s brink.

The birth and aftermath of Liv II et al

(OK I wrote this last week, pretend it's a week ago. I'll then do a new update!)

March 27th
So, I’ll give you a quick update on where I stand right now. At the moment I’m down on the Dialysis ward, receiving this funky, amazing and expensive two week treatment; my antibodies aren’t really liking my new bits, so i’m halfway through the two week process to rid my blood of them. It’s an immuno-absorption process I believe called plasmapheresis (so many names have been thrown about), where my blood is taken out, the plasma (that holds all the antibodies and other proteins and blood-things) is filtered of my antibodies in this massive machine, then flows back in. After the 3 hour treatment I’m given IV immunoglobulin (with a whole heap of other goodies before to stop any possible reactions/ nasty feelings), which contains a fresh batch of new antibodies, no liver hating ones to be seen!

Excited first time! Hi steroid face

Vampire machine getting boring... same t-shirt, nice. 

This was almost the last resort after the hell load of steroids that turned my face into a colossal mass, plus escalating amounts of other immuno-suppressants failed to sort out my pesky volatile white blood cells. Apparently I have a “robust immune system”, which in any other circumstance would be a major FTW moment, but sadly not post transplant... It’s done me well has my immune system, and I apologise (to my chest as well)! for wiping you out.

Day 4 into this treatment I took an awful reaction to something, and had 2 days of feeling SO sick - a flu-like, nauseous, intensely headachey, can’t look at lights, sicky sick.  Not since Jonathan’s birthday party when I was 7 have I felt so sick (there was glue / fairy liquid eating I seem to remember...) I was so tentative this morning about trying again, but it was decided it was probably a reaction to the citrate – an anti-coagulant thing they push through at the beginning. And voila – now, 45 minutes in and without any citrate being used (heparin instead), I remain fine – albeit some sore fingers from having them crossed since I was informed of this un-nerving plan to try again!

I have 4 more sessions of this, and then hopefully, if it will have worked, my body won’t reject my fab new organs and I can FINALLY head back to home sweet home. As much as the idyllic country view out my window is gorgeous and serene and really quite purdy, it ain’t home. If this treatment doesn’t work, they might take my spleen (a.k.a white blood cell training camp), then who knows how much longer I’ll be looking at fields for... Regarding the spleen, the previous source of all my cosmetic woes: before I would have been like HELL YEAH hello flat tummy, but now I really don’t want more surgery, it’s proper tough and everything takes such a beating. My kidneys failed, you can’t move, every inch of you is sore, you turn into a bag of bones, my chest has only just escaped from some dire stage - i'm only off 24/7 oxygen as of last week. However, as of 2 weeks ago it’s shrunk from 23cm to 17cm, possibly even more now, which fills me with a huge sense of not only relief but humungous joy and breaming optimism! My liver function levels so far seem to be swooping down quite beautifully on this treatment which thankfully not only means Liv II is working almost as fantastically as it (she? Is it a she yet?) should, but would mean I should also be able to keep my spleen, which I gather is quite helpful in us CFers!  (A working liver!! Eee! Bring on the mohitos eh eh.) My stomach is not quite washboard, but I can't get over the difference already. I know vanity should be furthest from my mind, but the thought of going out wearing normal beautiful clothes, not self conscious, not hating being out, not detesting every moment of public existence, (almost) literally makes me soar. 

I actually had two ops. Two trips to the clinically cold and intimidating (yet bloomin’ exciting) level 2 operating theatres. First was the actual transplant that took 12 hours, I had to go back in for a second time a few days later because they thought I was bleeding all around my new organs…which um I wasn’t. It was just fluid. A jej tube (like a gastro tube but into the jejunum part of the small bowel rather than the tummy) was also put in so I could get calories whilst zombied out and morphined up on obscene amount of drugs. The experience in the operating theatres was an odd one. I don’t think the reality of what’s about to happen actually hits, and even though inside I’m buzzing and excited like a banshee, I’m caught in this strangely slow and strangely calm liminal, timeless space, where voices are a muffled hum – figures draped in blue float around and even though you are the main event, no-one seems to notice you. Maybe they did – maybe they were talking right at me, but I didn’t hear. “Like some bold seer in a trance” as Tennyson wrote in (another of) my fav poem; numb not only what was to be physically but mentally aswell. I thought there would be some D-Day moment where I was told to count down from some profound number, all eyes watching until everything slowly went black. But instead the last thing I remember is having a mask put on me with a flippant remark that was a sorry excuse for an explanation, then told just to take slightly deeper breaths. Some blue robed figures stood talking near by in a little huddle, a couple stole quick glances and smiles in my direction, I was thinking “when’re we gonna start this thing?”, then almost immediately some figures, now in green, are muttering in very slurred tones, and I need to cough. But I can’t? Like wtf?

For quite a while I was so confused, and wondered if they’d even done the op. I was sure they hadn’t. I tried asking these green nurses, but couldn’t talk. Jesus fuck a duck, what have they done to me? I remember I could feel this epic rumble in my chest in the top right, and tried to do another huff or a cough but I had no puff at all (and holy crap, the pain in my middle when I tried!) It was like I couldn’t breathe as something was blocking my airways: It was the worst feeling I think I’ve ever experienced, no joke. This was the ventilator. I then tried to call a green robed nurse, but again my efforts were painfully futile. I panicked and winced and waved a heavily laden arm, weighed down by a heap of tubes sprouting from every inch of me, and tried desperately to motion that I-have-a-rumble-here-and-I-really-want-to-cough! And despite this hideously painful effort, no luck. “It’s OK love, you’re in intensive care. Keep your arms still... yes, you have lots coming out of you, don’t you!” Nah you silly cow. Then I saw mum, and tried to motion my dilemma to her. Hooray for mothers is all I can say. She eventually got it, and they brought out a sucky thing and stuck it (I think) down my nose. Nice. Didn’t even really work. A comatosed sleep later, the next thing I vaguely remember (though mostly from what mum had told me that the nurses had told her) is spontaneously coughing and simultaneously (somehow!) ripping out my ventilator. LMAO.

I ripped out my ventilator after the second op too despite even larger amounts of sedation.  I obviously don’t like ventilators. Who bloody would. After about a day in Intensive care I got moved to the High Dependency Unit, where my memories from both times mostly consist of hazy faces, odd dreams, and lots of pain when I would try to move. I had a morphine button I could press whenever I wanted to (it did have a maximum amount it would administer, no overdoses here!), but anytime I fell asleep I would wake up in agony. Massive design fail. I remember having a dream about facebook, and if I didn't log in then Facebook would steal all my money and pretend to be me with status updates about how I had died or something - and being sure it was real. Like a big hypo (once I was absolutely convinced I was in an alternate reality). I tried to ask a nurse to get me a computer or my life would be over, before probably zonking out again. It took ages for me to realise it was all in my head, and how sad this was!

The second op really kicked me while I was down; it took so long to recover and my left lung collapsed. My chest is still recovering (now it’s solidified a bit or something equally as odd sounding – a consolidation I think) poor thing, slowly, but getting there. As I said i'm only just off oxygen - now I can walk around the ward and go downstairs without it, though it's not a comfortable experience. I just have to tell myself I will be fine. I did do a lung function yesterday, and the numbers weren’t pretty. Not as dire as I expected, but I can’t remember the last time I’ve seen numbers like that. Of course, this is all understandable given the scale of turmoil they’ve been subjected to and my lack of doing anything - and I have no doubt I’ll get back to my norm – maybe even surpass it – but it’s still disheartening. From my best of 80% FVC and 60% FVC1 it’s now almost 60% and 30%. (I think if I did another blow in the afternoon and not first-thing-in-the-bloody-morning-half-an-hour-after-I’ve-woken-up I could get it to 40% oi oi). I have been going down to the rehab gym with my dad almost every weekday since i've been able to walk without wobbling spectacularly in order to combat both chesty crappyness and muscle disappearance – I cycled 5 miles the other day whilst listening to mostly Boney M and Britney Spears. I blame the meds.

The jej tube they inserted was also a bit of a mixed blessing. Of course, while I was still recently post op it was great to get the vital calories in via the feeds. But after a couple of weeks it became a nightmare as simultaneously it would fill me up AND make me both feel and be sick. This combination wasn’t helpful in getting to eat by myself, so weeks went by caught in this vicious circle of trying to get enough calories in whilst trying to have a big enough break to see if the nausea and fullness would subside in order to begin to eat myself. During this process I lost a load of weight, and you’ll find me now at a measly 39kg – I was initially 52kg. I’m eating now, so somewhere along the line my appetite started to pick up... and now I’m off feeds for good. Not fortijuices/ fortisips though, these are still haunting my days!

On the topic of food, I suppose I really should have started off by saying this: I no longer need creon nor insulin!! Major fucking win! Mealtimes though are strangely incomplete – I finish eating and am left with an unsettling feeling that I have some unfinished business. As I sit and play with the leftovers or proudly scrape an empty plate, I can’t help thinking that the mealtime isn’t finished – both enzymes and insulin brought a satisfying sense of closure to each meal. Now it feels as if there is no way to close that meal book, no The End. OK, yes, dessert sort of fills that hole, but still, it’s odd. Odd, but BLOODY BRILLIANT. I’m still getting used to it! Soon this uncomfyness will turn to liberation, I’m sure of it, but it’s hard changing life habits! I’ve had to be put on a sliding scale (continuous insulin) a couple of times when I was having huge doses of steroids (500mg a day huge!), which was boring, and whenever my sugars soar up above 15 because of my maintenance dose I get given an injection. It’s horrid sailing back into territory you thought you’d left behind – left with such jubilation too, and I get so worried my new pancreas is failing! Though I’m reassured it’s just the steroids and it’s all normal. Normal. Normal. I’m fine. Fine. (Eek!) I guess if my liver is rejecting a bit my panc would be too, so again with my funky blood treatment things should settle down soon.

SCARRRRR RARR!

And oooooh my scar! Sorry, did I say scar? I mean shark bite. My shark bite is massive. It’s called a ‘reverse L’, and I kept remarking how if I looked in the mirror I could write a backwards ‘aura’ and spell out LAURA! From the middle and bottom of my rib cage it goes all the way to the top of my bellybutton, then across half way round my side. It’s still ugly, especially in this glowing pink phase with staple dots radiating on either side, but kinda cool. I thought I’d hate my scar, but to be honest, I’m kind of proud of it. My battle scar, my war wound, my physical indication of this epic journey. I’ll get back to you with how I feel about it in 6 months though... I hope I learn to love it. Pain wise it’s fine now, but it was so tender I couldn’t cough without wincing for about 3/4 weeks. Physio was a nightmare. No matter how many painkillers / pain buttons I had, the pain would not subside which made clearing anything really tricky - every breath was a drawn out screech. Luckily I’ve never had real trouble breathing apart from shortness of breath/ tightness/ the occasional gunk overload (mostly due to hypertonic saline I’m forced to neb/ I choose to neb in moments of temporary insanity), but the intense panic that aroused from not being able to fill your lungs fully with air was terrifying. It felt like they had been compressed into a tiny tiny pocket near the top of my ribs – there wasn’t enough puff to blow my nose. Thankfully I summoned the Bird to help, and attached my acapella to it in the Brompton stylie. Oh boy it was sore, but all that oxygen whooshing in was heavenly! I’m back to just the acapella now, and have strangely overcome my sputum spitting fear. I could almost be a natural... (almost. It’s still naaaasty.)

Tha's ma Bird

I realise It probably sounds like a lot of complaining on my behalf – boo I’ve lost weight boo my chest is crap boo I’m bored boo hospital food sucks etc etc, and well, yes, there IS a lot to be annoyed with. It hasn’t been fun. BUT, and here’s the big but – don’t let me give you the impression in any way that I’m not the happiest, most grateful girl ever. After these temporary blips it’ll be fucking awesome. I can’t wait to take them and me out and have some fun and live some life! Lastly, but no means least(ly), a massive massive thank you to the donor’s family for saying that all important “yes” in the midst of such heartache, and of course to my donor for being a star and signing up. A thank you written here seems totally measly – Keats wrote to Fanny “For myself I know not how to express my devotion to so fair a form: I want a brighter word than bright, a fairer word than fair...”, and here I sort of share Keats' blissful woe. But don’t worry, I won’t resort to posting a pic of my big fat Cheshire grin either.

That’s all (that’s all? I just wrote a frickin’ novel) for now!

HELLO

A very, very, VERY belated HELLO! from not only me but my new liver, pancreas and bits of bowel!!

This will be an extremely quick post, just to reassure (and cast despair into the hearts of my enemies) that I am alive and well... WELL!

As amazing as Addenbrookes is, and has been to me, I will say now they fail miserably on the internet front. THERE IS NO INTERNET. Now I'm finally up to walking about and leaving the confines of the transplant ward, I have discovered a neat little pocket of wifi in Costa coffee on the ground floor - a whole 5 floors and long corridor away from my air mattress. (Yes, air mattress. I'm a skinny minny right now with a creaking back.)

I will prepare a summary of my adventures (oh there have been many!) soon, but i've only just in the last week or so been feeling up to doing more than lying in bed watching mindless TV... actually not even - i'd say moaning and complaining about shit. Actually I haven't even been complaining, more... nothing. It's been really odd. It won't be too long or mind-numbing, but i'm sure people might want to know what sort of things go on in this strange world of organ donation and receiving. It's certainly been tough, but I have no doubt the rewards will far outweigh this few months of slog.

This is now week 7 after my transplant - I got the call at 22.22 on the 22nd Jan, went into room 23 on the transplant ward in the early hours of the 23rd, and I am... how old? 23! BLOODY KNEW I was onto something with all that superstitious Freudian numerology shit! Since that date I've progressed all round the transplant ward, from theatre, to Intensive Care, to High Dependency Unit, back to theatre, back to ICU, back to HDU, side room, bay, new bay, old bay, side room, bay, and finally, back to where I started on the 23rd, room 23. Hopefully my last pit stop before I am released back into the big wide world. With my shiny new organs. Or as I once predicted (all those months ago!), out of my cocoon with shiny new butterfly wings into the spring! (F off snow and gales and rain, you are not welcome. It's nearly April for heavens sake.)
Plus, I have a swanky new flat-ish tummy to show off...!

I will post more in the not too distant future, but CSI Sunday and some IVs call. And I think my gastrograffin is starting to work...  

Buck up, Liv!

It's happened.

I HAVE FLUID in my abdomen. In my belly... button.

Yup, belly button. LMAO.

There's also some in a few other places around my liver and dotted about that general area, but yes, that dreaded 'ascites' has hit.

I went up to my Addenbrookes appointment last tuesday, and just as I sat down in the ultrasound waiting room, I had this intense pain all around my belly button. It's really hard to describe - even now as i'm writing I just want to giggle as it sounds ludicrous. A sore belly button? Get ouuut! But it was popping out so much, and everytime I coughed there were these pangs all around. I told Mr Ultrasound man, and after looking at my 'lobulated' liver ("Cauliflower? Yes, so-and-so does have a way with words..."), and pointing out the pockets of fluid (*SOB*), he zoomed in at my lovely little bellybutton. Not only was the hernia still there, but now it was joined by fluid. He didn't know exactly what would have caused the pain, but him and my doctor later told me to 'take it easy' ha! This ascites thing happens with liver disease - fluid just fills up the whole abdominal cavity. All doctors assume I have it as my stomach is so distended, even though it's just sheer bulk of enlarged liver and spleen. Until now. Thankfully there's not much - I think i'd pop if more started accumulating. I've been prescribed diuretics to hopefully keep it at bay until i'm the lucky recipient of a new liver.

I've also been gradually getting this lovely yellow glow. It's oh so subtle, like when you hold a buttercup under your chin from a, well, ladylike distance, yet i've gone and walked into a whole room of them. I think it's been getting worse at the same rate as my cough has been getting worse, which would make sense as any infection can push my liver over the edge. I'm getting seen at the Brompton tomorrow morning (yes, morning. Oh crap) to hopefully nip this all in the bud. Yet I can hear the Brompton moaning now about how antibiotics are bad for my liver and are reluctant to start me on anything blah de blah... (I've already ordered cipro from the GP...) This is going to be a tediously long and exhausting day. Add into this mix two gloopy vitamin injections and an overbooked afternoon clinic appointment after my 9am date with the vampires.

Then a birthday party.

Aaaahh crap.


Update: Chill, everything's fine woop woop. Yellow had gone by fri (typical), but was started on cipro to prevent anything taking a tumble. As mister doctor said, without a moan anywhere to be heard, we're not taking any chances! Oh I love it when they think i'm important!


   

Dear Santa...

Top of my crimbo list this year was two things, in equal joint place. Liver and pancreas. I don't normally do 'soppy'/ Tiny Tim / whole-heartedness/ 'as long as I have my health i'll be the happiest girl alive' and all that vomit inducing selflessness, but at this point in time, I really don't care a jot about the Coca-Cola commercial christmas. Saying that, I have asked for Supernatural on DVD and a few more JG Ballard books and a short pink wig. But that's it (lols). All I can think about is some new organs and how that would be the best present EVER. This would be a good year for Oliver Cromwell to return from the dead and cancel christmas (fucker), because I wouldn't care. I just want my new lease of life to begin. OK, after my Christmas dinner calorie fest and Downton Abbey preferably... I keep having this morbidly funny image of Santa dropping down the chimney dressed in scrubs and brandishing beautifully wrapped organs, before performing surgery between mince pie and milk breaks. Enough. Sorry.

I remember last christmas, when I had just received my transplant assesment letter through the post, I thought 'Next crimbo I might have sparkly new organs!', but that glittery dream hasn't materialised. Still, i'm awfully thankful i'm not fighting tooth and nail for my life, like many waiting for lungs are. At this point I think it's not a matter of saving my life, but enhancing it. Of course, like failing organs do, without a call my liver will eventually pack up and leave town, like in my Ballard book, south into his inescapable and deadly inferno. A place of no return. But not yet. It's just slow, and groggy, and tired. Like me. Very tired. And making my life shit.

I went out to celebrate the end of the world the other day, and even though the world didn't end, I felt pretty apocolyptic. My hangover lasted two days, despite alternating alcohol with diet coke and water. It's ridiculous, thanks liver. I really didn't drink that much at all, but it felt like I had been on a week long bender. And don't give me funny looks, because I know exactly what i'm doing. (Plus i'm getting a new one, innit Santa.) It had been about a million years since i'd mustered up enough courage to venture out, but i'm pleased I did, as it was quite an eventful night, seeing people (well, one person in particular) I haven't seen in what feels like an eternity.  Still, no amount of alcohol induced fun is worth feeling so terrible, nor is it worth the chance of a liver meltdown. I dread the day I wake up, look in the mirror, and see that sickly yellow sheen again.

Anyway, I'll banish these morbid thoughts, especially as it's Christmas eve eve. It's odd how at these milestone occassions positive thoughts of forgetting troubles and having fun collide with an inevitable undertone of sobriety as all that is important to you becomes so prominent in your mind. It puts things in perspective I suppose. About what's really important. I'm not saying a Supernatural box-set isn't important, but you can live without it. And there's some things you can't. So to all those hanging by the telephone, I hope it rings soon. But until it does, enjoy the mince pies. And the turkey. And the mulled wine, and the roasties and the parsnips and the cranberry sauce and OMFG IT'S CHRISTMAS!!!!

Life in a onesie

This is one of those blog posts where I apologise for not having much to say, but still go and write it. So, I don't have much to say. Sorry! I've been living under the radar, where it seems all combinations of tedious bugs, bacteria, colds, coughs, liver troubles and hypos can't find me. I've been steady for quite a while which even though dull and doesn't make for a good blog post, suits me just fine. More than fine. My stealth manoeuvres (which mainly consist of moving from bed to the sofa to the fridge and back again wearing a fetching leopard onesie) may not lead for the most exciting of lives, but a trouble free existence. That's all I want right now. An existence suits me just fine; Life can resume when Dr Frankenstein has worked his magic. I still call a fridge raid and shuffling round the house a 'stealth manoeuvre'  to inject some excitement into the banal... and queue Mission Impossible theme. Little pleasures.

I've had no calls, not even false alarms. I do feel a little forgotten about in momentary flashes of woe, but transplants are not something you take personally. These moments sometimes extend into reflective and contemplative episodes, where the enormity of it all and that rare pang of fear jumps in and surprises me. I don't get it often - excitement swirled with a christmas eve-type of anticipation tends to be the overriding feeling. Mixed into this concoction comes the frustration. Not just frustration at these months of waiting, but at how house-tied I am because of how I feel, and how I look. It's tiring and draining physically and mentally. If i'm being honest I think it's more mentally at the moment. I'm probably looking 9 months pregnant now, and you can't hide a bump that big. Trust me, i've tried! It sends me into a dark downward spiral, that before I was put on the list, I could hardly clamber up out of. Like Alice drowning in her tears in a similarly hypo-ish Wonderland. Since i've been on the list that sinking feeling doesn't swoop down on me quite so intensely as before, because now I now that it won't be like this forever. But until then, it's still easier to melt back into a onesie and a duvet and hide myself away from the world. When I sleep 13 hours (plus naps!), that's not too hard really...

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.

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!

Filling days

I haven't been completely useless these 6 months.

I have a job every friday, aiding an old family friend through his quest to publish some books. At first, I was cataloguing and organising his wealth of Victorian stereo-photographs - you look at them through special specs and they're 3D! They're quite amazing, especially the ones of Tintern Abbey, a handful of wars, and all these Royal occasions - and all from the mid 1800's. There's been lots of other things in-between, but now i'm about to embark on sorting out a little Victorian girl's diary, and a big bundle of letters. It's very Downton Abbey-ish, discussing scullery-maids and other things from bygone days. I get paid in money, tea and endless biscuits. And the odd jar of homemade jam, yummy.

I do other stuff too. And it's this other stuff that has really kept me sane throughout these few months. I have such fun gossipping and chatting and helping and planning, that as much as I bang on about feeling adrift, i've found i'm floating on rather a fun little ship! (Thank you :D)

Admittedly, I haven't done nearly as much reading as i'd hoped, and I haven't tried drawing a single thing, but i'm not going to beat myself up about that. You make grand plans as you try and capture this precious free time, yet it just seems to slip through your fingers and trickle away.

Drowning

I gave up on Ulysses. I caught the drift, and didn't feel like putting up with another 600 pages of it. Life is too short!

So instead I picked up 'The Drowned World' by JG Ballard. Another possibly pretentious escapade, but at least science fiction is fun! (And I like Ballard, all his books seem so interesting...)

I've only read maybe, 50 pages, but already I love it. This is from the blurb:

"Fluctuations in solar radiation have caused the ice-caps to melt and the seas to rise. Nature is on the rampage. London has been transformed into a primeval swamp, and within its submerged landscape giant lizards, dragonflies and insects compete for dominance. Human fertility is in decline and buildings sink beneath waters infested with decaying matter. Into this wasteland a group of intrepid scientists venture to record the flora and fauna of this new Triassic Age. Soon, ghostly voices haunt their waking and nightmares permeate their sleep..."

Fantastic, huh?

It's a proper dystopia, and despite the cause of this 'global warming' being rather far-fetched, it's a scarily accurate pre-emptive and haunting vision of what's happening to our planet, and what it could become... There are lots of giant bugs, and that in itself is pretty bloody horrifying. He wrote it in the early 60's - spooky.

Anyway, I want to share this paragraph - of course my life and the protagonist's couldn't be more different (duh), but this little snapshot of thought seemed to resonate. Transplant stuff (did you expect anything else!?).

I seem to be caught in this odd form of withdrawal - it isn't unpleasant, far from it. It is strangely calming. I've described it as a bubble before, and it is. It just seems to be becoming larger and noticeably quieter. I don't want to make this looming 'metamorphosis' bigger than it actually is, but it's quite an interesting way of putting it. Things will have to adjust, things will have to change, and I suppose in a sense i'm preparing for this 'radically new environment' by distancing myself from my previously normal(ish) life, whether I was aware of this or not. I think i'm going to be spending a lot of time in this new 'internal landcape', re-adjusting to a life where things i've known before will suddenly become obsolete. Like the whole process of calculating insulin and creon - things that pretty much determine how I live my life, what I eat, what I can do, where I can go - suddenly i'll live my life (in parts) ungoverned by these rules i've seamlessly built in. It'll be so liberating, but I can imagine it'll be weird! Maybe by withdrawing i'm also just getting used to a sort of loneliness or isolation or boredom that soon i'll have no control over, as I lay stewing in crumpled clammy bed sheets hooked up to drips and lines and beeping machines. With messy hair. 

Today is 6 months on the waiting list. So much for 3 months eh! Pah! I don't know if it's gone fast or slow... I couldn't say. It's all a little mushy and formless. Sometimes time flies past so incredibly quick that I blink and suddenly realise the leaves have transformed from a luscious summery green to that luxuriously melancholy autumnal red. Other times, days couldn't drag by any slower, and every hour seems to stretch into an everlasting and bitter reminder of time's slow, cruel passing. Then all these moments blend together, swirl and dissolve into a jumbled and incoherent timeline of... nothing much. It's. so.     bloody.          odd.   

I think Ulysses and it's modernist ways have caused some form of brain damage. Damn you Joyce and your time altering powers! Hate to think what 600 more pages would've done...                    

Chocolate chips and Cauliflower

Trecked up to Addenbrookes yesterday just for a clinic check-up and ultrasound with my dad. Had to be in Cambridge at half 9, which wasn't fun. The early morning drive through the fog was incredible though - huge dense pockets of it hugging the ground until you escape out the other end into gleaming sunshine! Mornings are odd things.

Nothing much had changed on my ultrasound - spleen couldn't fit on the screen (too darn massive), and apparently my liver looks like a cauliflower. The guy showed me this huge egg-sized bump sticking out of the top right hand corner like a disgusting growth, and all these nobbly pointy lumps all over the liver. I have a pretty tough stomach, but i'm not going to lie, I felt sick. I have this horrible deformed thing growing inside me. I just want to rip it out myself and fling it as far away as is humanly possible!

I also found out they're not going to replace my gallbladder when they take it out along with the liver and panc and duodenum, because you don't really need it and there's a risk it could get infected post op. Awesome! The doc said my surgeon, Mr Butler, wanted to see me and say HI, but he had just been called to a kidney transplant. Someone had probably been waiting years for that, so that's pretty special. Walking through the hospital to get bloods done I kept thinking about someone, somewhere in this giant labyrinthine monster of a hospital, lying in an operating theatre with Mr Butler working his magic. It'll be me soon. Soon ish? Ish? It's so exciting!

Dr. Allison was pleased with my weight, my lung function, my muscle mass, and my decision to re-start my antibiotics despite Brompton panic. I feel so chuffed each time I say I still haven't needed any IV antibiotics - not since december last year. 10 months. Nearly a year! But i've been working so hard at maintaining my lungs, out of pure fear that i'll be declined a liver. When you have something to really work for, you try so much harder than you even thought you could. It's like a lung function - even when you think you've blown your absolute best, there's alway a tiny bit more you can squeeze out. When I was little and my mum would do my patting physio, she'd name all these yummy foods one after the other, and for each one i'd have to take a little breath in, until I had filled my lungs up so completely I was about to burst. She'd then say "chocolate chip!" and i'd have to squeeze in one more tiny bit. Even when I thought I couldn't do anything more, i'd always squeeze in that last chocolate chip!






I always think about that chocolate chip, and not just when it comes to lung functions or physio. Thanks mummy. (I always eat one more too...!)

Tuxedo Times Two

As it's National Poetry Day, and as it is ALSO National I Love My Cat Day (which is everyday btw), I thought I'd post a poem that was basically written about my 'dear little cats' a.k.a 'jellicle' cats: Sky and Snowboots.

The Song of the Jellicles
Jellicle Cats come out to-night
Jellicle Cats come one come all:
The Jellicle Moon is shining bright -
Jellicles come to the Jellicle Ball.

Jellicle Cats are black and white,
Jellicle Cats are rather small;
Jellicle Cats are merry and bright,
And pleasant to hear when they caterwaul.
Jellicle Cats have cheerful faces,
Jellicle Cats have bright black eyes;
They like to practise their airs and graces
And wait for the Jellicle Moon to rise.

Jellicle Cats develop slowly,
Jellicle Cats are not too big;
Jellicle Cats are roly-poly,
They know how to dance a gavotte and a jig.
Until the Jellicle Moon appears
They make their toilette and take their repose:
Jellicle Cats wash behind their ears,
Jellicle dry between their toes.

Jellicle Cats are white and black,
Jellicle Cats are of moderate size;
Jellicle Cats jump like a jumping-jack,
Jellicle Cats have moonlit eyes.
They're quitet enough in the morning hours,
They're quitet enough in the afternoon,
Reserving their terpsichorean powers
To dance by the light of the Jellicle Moon.

Jellicle Cats are black and white,
Jellicle Cats (as I said) are small;
If it happends to be a stormy night
They will practise a caper or two in the hall.
If it happens the sun is shining bright
You would say they had nothing to do at all:
They are resting and saving themselves to be right
For the Jellicle Moon and the Jellicle Ball.

T. S. Elliot

Sky is the one with the little white smudge on her nose. She's mine. Or rather, i'm hers. 







Meow Pin up by Alberto Vargas

Blah

OK, i'm totally bored, and have resigned myself to the fact that this tx thing might take forever. I was naively optimistic that it would happen in 3, 4 months, but the reality is that it could take BLOOMIN AGES.

So enough of this giddy waiting.

I'm going to go paint.

What will I paint? Whoooo knows.

And then i'll go to the Tate on Sunday to see the Pre-Raphs.

Then i'll think about how I can fill my days properly. Twitter doesn't count!

I have to get over this fear of going out because of my tummy and just do it. I'll just pretend i'm preggers and go baby shopping. OMG actually this sounds fun? I wonder if there are any free things for pregnant chicks? Like pampering things... foot massages, or spa treatments, or coffee mornings... LOL.




I've lost it.

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

Out, damned spot!

It starts with a slight tickle in my throat. Then I sense an icy sharpness somewhere a little further down. Then I spontaneously cough. But it's not a normal cough. Instead of either a little bit of satisfying gunk popping up, or a reassuringly dry echo, it's thin. And liquid. And if my chest had eyes, i'd see it was red.

It's this succession of events that fills me with dread. Not in a Keatsian "this is my death warrant" kind of dread, more a "oh for fucks sake, not in public" kind of dread. Because when I start coughing blood, it doesn't stop for what feels like a lifetime. I can't do a big cough or a huff until whatever is there shifts, I have to wait for whatever torn blood vessel deep down in the fragile tips of my lungs clots. And the thing is my blood doesn't like to clot. Thanks liver.

So for the next 5 or so minutes I keep coughing, every few seconds. Bubble, cough, swallow, pause. Bubble, cough, swallow, pause. My inner vampire i'm sure relishes at this stream of molten rubies, but not even a disillusioned schizophrenic wannabe vampire can cast aside the disgusting clammy metallic taste and slimy consistency that i'm forced to swallow. Sometimes, if it's been going on for longer than I care to imagine, I grab a glass and start to watch the disturbing contents of my lungs fill it up. When this first started to happen a few years ago, I used to be in tears, thinking this was the beginning of the end. Blood being ejected from any part of the body is horrifying, it seems to trigger within people an extreme reaction of abject terror. Not surprising given it's our core, our unrelenting fuel.

It now doesn't scare me, knowing it's not too too serious, and probably (and like so many gory body things) because i've become so immune to anything remotely disturbing. It's not that it just doesn't scare me, when I see blood, it almost fascinates me. It's the oddest texture when it clots, like fast-setting Vampire jelly. And the colour is insane - the deepest red, so rich and regal. I suggested painting our bathroom that colour. Mum firmly said no. Pity, because it complimented the tiles just perfectly.

CF desensitises you greatly to things that might turn the stomachs of the general population with endless exposure of blood, phlegm, organs, bodily functions, and now transplants. You grow up talking about organs in terms of how they're functioning, what they're up to, why they're not working, how you can improve them. Bodies and all that goes on inside them become stuff of everyday banal conversation. Gushing blood, funny x-rays, CT scans of lumpy livers or increasingly scarred lungs become problems that need to be solved, shapes and shadows and highlights on a screen, rather than an invisible amalgamation of your 'essence of being' or some bollocks like that. Bodies are like machines, parts making up a whole. Bits and bobs, nuts and bolts. You see your body like a machine, you don't get scared when it starts to dribble oil. If something stops working, you try and replace it. I suppose it's a sort of uncanny detachment, a severing of the mind from the body.

This living hand, now warm and capable

Of earnest grasping, would, if it were cold

And in the icy silence of the tomb,

So haunt thy days and chill thy dreaming nights

That thou wouldst wish thine own heart dry of blood

So in my veins red life might stream again,

And thou be conscience-calmed—see here it is—

I hold it towards you.

                                                  John Keats

(See how odd that poem is? That's what i'm on about! An uncanny detachment from your body.)

Unsettlingly unfazed, alarmingly desensitized. I think this is why you'll find most CFers have a grotesquely dark sense of humour. I sure do, but i'm not sure whether the uninitiated public are ready for it. Should hear the 'jokes' thrown about in the safe confines of this house! I hate to say i've caused a few pale faces with my flippant remarks of very un-flippant things... Oops. I think it's the unknown that unsettles the most. Whoever said 'ignorance is bliss' was seriously mistaken. 'Knowledge is power' reigns in my kingdom. Knowledge calms, knowledge soothes, knowledge hands you the tools to understand what is going on in our intricate and amazing bodies. If you know, then it certainly won't be the fear that consumes you.

Reporting... not much?

Nothing very much to report these days, life has been extremely uneventful. I keep forgetting about recieving life changing calls from Addenbrookes, i'm almost convinced this is all a huge joke. Putting my phone in my pocket wherever I go now happens through relentless and mind-numbing routine, rather than the apprehension of recieving a call. I now find I can go a day without even thinking about transplants. My heart doesn't race when my phone makes a beep (text) or a squeek (twitter) or a rattle (med reminders) or a pop (facebook) like it used to, but it does still kind of do a funny little skip when I get a call - a sudden reminder! But people don't call me that much (3, 2, 1, awww). September has even arrived, Home and Away has started back up again... all these little things I thought i'd see with two new organs have been and gone, lost to my fickle world of superstition, coincidences, pattern and luck.

So instead I treck to and from my fortnightly hospital check-ups, with nothing new ever to report. Today, like the time before and the time before that, my weight was up a teeny bit, lung function almost exactly the same, nothing exciting, no new hurdles to overcome. It's reassuring and good. Good, but dull nonetheless.

I also have so much time. Bundles and bundles and bundles of time. To do what? What have I done with this rare luxury?! So many people pray for time, more time to do whatever they desire. My time seems to be eaten up NO gobbled up by some invisible time consuming monster. Actually, I think this monster's called 'Twitter'. What a waste. I still have a huge pile of books to work my way through (Ulysses included - I wanted to read Ulysses for some god-knows-why reason - to kill time? To kill me?), but most of the pile remain untouched and unloved. I've been reading the same book for months. I footle about on the internet until some horriffic hour, read only a couple of pages, then sleep. I wanted to read! I wanted to paint! I wanted to learn the saxophone! (OK maybe not, but why not!) So thanks silly twitter/demand five/iplayer/amazon/blogger/iwantoneofthose.com for absoloutly nothing, you dumbasses.

(I'm sorry, I love you really internet! I watched Tom Daley's 'Sexy and I know it video' the other day - but i'm not going to say anything because he's the same age as my little brother and makes me question my sanity/ hormone levels.)

(And also, the internet is the only thing I have left that is close to the real world (this can't be right, ed.) given I will only go out if I am forced to thanks (in part) to the security lady at the Paralympics who said: "Here, walk round this way to avoid the x-ray machines, you don't want to be going through those, love". Don't LOVE me, i'm not fucking pregnant. I smiled and thanked her (dearly, for saving my unborn child's life). The words final and straw came to mind. Soured my entire day out at the Olympic park. I just wanted to run home sonic-style.)

SOON, I keep telling myself when things like that happen. Soon. Until then, i'll just bury myself in a boo... sorry, Twitter. Obv.

Saying that, Twitter isn't helping calm my boiling blood at the mo. This relentless limbo has trapped me in a world revolving around CF. See, all I ever talk about is transplants. And CF. And more transplants.  And it bores me, so I apologise profusely if it bores you. Twitter, as much as it entertains and can comfort me, winds me up too. Too much whinging. I can't wait until I have something better to do so I don't have to be constantly surrounded by whiney reminders of this shitty disease. It shouldn't consume so much brain space. Doesn't deserve it, really. It has it's sticky paws on enough organs as it is, greedy bugger!