Friday, 26 April 2013

Extended confinement at Hotel Brompton boo hiss

Yeah I knew i'd spoken too soon.

It went like this:

IVs randomly stopped > cold > nastier cold > cough > nastier cough

So um, another 2 weeks of IVs.

On a brighter note, JLS have split, which gave me a whole day of fabulous tweets, mostly from that Katie Weasel account and the #JLSwewillneverforgetyounotevenindeathbutImightaswellbedeadcosmyheartwontbeatagain hash tag. (Or something along those lines).

I saw this last night outside my room with a "To be condemned" note on it (one of the notes had lots of exclamation marks - some freak physio must get a litte rowdy at the thought of incineration/ putting something outside for the bin men), so thought i'd bagsie it to take home (exercise bug is still here... this is getting worrying). But then the one I wanted magically slash maliciously disappeared this morning leaving the other, substantially scruffier, one. However my stealth sign manoeuvres were all in vain as the physio said I wouldn't be allowed it, or either, ANYWAY. What a meanie. She obviously takes pleasure from others' pain (both humans' and machines' - at least she's not discriminatory, thank heavens for that) and so it was obviously her that took great delight in condemning those poor bikes to some mechanical hell. It was written in thick, evil,  red marker too. (Blood is a now a precious, heavily monitored commodity in hospitals (thanks NHS cuts) so no more scary notes or death threat letter-fun-times to be had). It's all a load of bureaucratic "health and safety" rubbish - why make us poor sick weak people suffer at the hands of an invisible Physiotherapy Tsar that dictates that because something is old it is dangerous and therefore unusable by those who desperately need it? Disabled abuse that is. Disabled, cheapskate abuse. 

Anyway I soldiered on through the heartache, only to be confronted by Mr. Consultant who made me burst into tears at the news my lung function is really shit and probably will never be as good as it was before transplant. Look here yeah, the deal was this would make it better, so I may consider asking for a refund. But then he said he actually hadn't looked at my X-Ray (to see if my diaphragm has been cured of it's vertigo and has come down), and was going on my snotty-cold lung function blow I did yesterday... mid fever-y cold. What a knob. So I was going to try pretend today didn't really happen, minus heart-broken fans, because they're funny.

However, I then pestered little junior doc ("Putty" I like to call them), into actually going to look at said X-rays - one from the beginning of my admission and the recent one, and lo and behold, how the mighty should have kept his insensitive trap firmly shut. Whose diaphragm has come down? Oh yeah. Given, not all the way, but the spectacular dome has now turned into a mild mole hill. (I'm going to stick with mild mole hill as that aliteration works nicely, but I don't actually know what a mole hill looks like. I think it must be flatter than a dome. This lack of mole knowledge is probably the one downside of living in a city.)

My theory was how do they know it can't be fixed given they don't know what caused it? It's not right that they can shatter my years of hard work, my FVC dreams*, my illusions of grandeur in one fell swoop. I know I said previously I like to know everything to do with my health, but with some things, especially ones that can't be fixed, I think i'd rather be kept in the dark - at least so I continue to strive for better instead of giving up. That's a dangerous place to be, and not a very nice one.

So i'll keep going with trying to get it down even more so I can fill these little things with as much air as I can, and getting rid of this god forsaken bitch of a cough. It's such a twat.

*Change "FVC" to "PVC" and i'm on to a porn-film winner.

Saturday, 20 April 2013

My heart with pleasure fllls

The time has nearly OH SO NEARLY come when I soon will be set free on my Bambi limbs into the big, ginormous, schizophrenic spring-time London world. Bambi limbs? Whoami kidding, these bad boys have made me feel like a proud mother. (To be fair all my bits have filled with me a deeply unsettling maternal love otherwise only my cat can make me feel. Which in itself is profoundly disturbing.) See, i've been going to the gym. The hospital gym. I think for the first time, ever. There may have been a time maybe 5 years ago when I was dragged down kicking and screaming, but I think my memory has blacked that occasion out, as it does after any severe trauma. The only explanation I can think of for this significant turn of events is that my surgeon snuck in a new brain. Not that i'm complaining or anything, but you know, ethics etc. I do forgive him for this, because the one i've ended up with has this craaazy setting called "Omg, I love The Gym! Let's Work Out!" So I have! Yesterday, I was on a treadmill. And I was jogging, and butt-wiggle-walking, and jogging again, and jogging on a trampette like a total gym nut. Even as I'm writing this i'm wetting myself at the absurdity of this situation. Like, flooding myself. (Enough now.) But as soon as I wipe away the mascara-stained tears of laughter and control my bladder, an overwhelming swell of pride wells up within me that if I was another person, could actually start crying real, non-sarcastic tears of joy.

You see, not only are my muscles working again, my little lungies can cope with this massacre! I can do a good amount without getting puffed and sats dropping to 89 for a long while after, like before. In the last few days they've only dropped to 93 at the height of this physical (and mental - "YOU CAN DO THIS BITCH") onslaught, and have steadily come right back up after. I'm impressed. Like, crazy impressed. This transformation has happened so fast! I really thought my lungs would never be the same. I may be speaking too soon. I may be optimistic thanks to this weird day of spring sunshine. I may just be buzzing from the amount of coke i've steadily/ not so steadily (ie maniacally) drunk over the last week or so (I can finally have coke again eeeee). But caffeine, sugar and brain-tingling fizz aside, something is going right. I have a record low CRP (infection level) of < 1. That's less than one if my symbol skillz are correct. Like, wtf. Is that even possible? Am I dreaming? Um, am I dead?... Is this heaven?! ("omg Keats where are you!? I'm like totes your biggest fan!!)

Alive or dead, I would like to thank my saviour, Mr Mannitol. This little wonder drug not only helps, it MAKES me shift a hell of a lot of gunk that I didn't even know was there. Before, there was lots of gunk. Then, magically, there was none. Then I started Mannitol, and WOAH. Previously i'd have been wahay i'm gunk free! My chest is super! But this unearths all those hidden plugs that block the lungs that I had no idea about, and now they're exiting the building quick sharp. But not on a suffocating in gunk level, more of a managable, physio time-frame level. Apparently, this is what most of my other nebs should have been doing all along? Thanks, you LOSERS for NOTHING. The amount of hours i've puffed away on DNase thinking "I have the utmost faith in this invisible power that obviously works in mysterious ways..." Well, bull. OK OK it probably still does something mystical, I won't slate one of my many time-absorbing-shites too much.

Hi, this is your box of sugar
Hi, this is how you inhale sugar

Moving swiftly on. To the new bits. They're super. End of. Best blood sugar levels on the ward. Allegedly. And this new energy must be coming from Queen Liv II (hm, too much?), and it is now a noticable change - the daylight hours aren't shrouded in an inane sleepiness. Especially with the amount of gym slob i've been subjecting myself too. Super. Tum is staying the same size now - I suppose I wasn't expecting a washboard, it would have been silly to, but I dunno, I cant say im not a little bummed that it isn't. That would have been awesome. Still, it's about a million times better than before and at least everthing in there is fab. That (I know my mother would tell me to say) is the important bit. She's totally right.

So yes, all in all i'm really chuffed and slightly taken aback by the progress at this point. I had nightmarish visions of everything collapsing around me, unable to clamber up and out of a crappy chest that in turn would poison everything else. It still might, as is the nature of the beast, but right now I'm wallowing. And i'm not even home! I escaped for the day today and had a charmingly Wordsworthian day.

I wandered lonely as a cloud
That floats on high o'er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.

Continuous as the stars that shine
And twinkle on the milky way,
They stretched in never-ending line
Along the margin of a bay:
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.

The waves beside them danced; but they
Out-did the sparkling waves in glee:
A poet could not but be gay,
In such a jocund company:
I gazed—and gazed—but little thought
What wealth the show to me had brought:

For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.

I've also just realised it's a year today since I was put on the transplant list. Food for thought, a feast for the heart. Crazy. 

Saturday, 6 April 2013

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!


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 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.

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.

Thursday, 4 April 2013

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.


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!