Fear No More

"'Fear no more the heat o' the sun, Nor the furious winter rages.' This late age of the world's experience had bred in them all, all men and women, a well of tears. Tears and sorrows; courage and endurance." 
Mrs Dalloway


It is almost a year ago since I said goodbye to CF related diabetes, yet the ward round at Addenbrookes on the second of January delivered a blow I had been dreading, a fear that since my parched and thirsty christmas had shadowed every thought. My immune system is attacking and destroying my islet cells: I have Type 1 diabetes. Through tears I bombarded the consultant with question after question...plasmapheresis...more immunosuppressants... yet the answer remained stoically cold: "there's nothing we can do". These tears drowned me for the next three days, my bay in Cambridge through my eyes uncannily reflecting Alice's drowned world, a salty sea of despondency. Like the last year hadn't existed, back into my life seamlessly appeared the bright orange pens of novo rapid, and the piercing monstrous green of the new beast, Levemir. Soon my bedside was littered with needles and plastic casings, piling up around me as I lay, maudlin and blurry eyed.

Back to the Brompton I returned, a few days later, from where I had started on the 27th. My Chelsea Pad brought me a welcoming solitude, high up and far from questioning voices and concerned parents. The western sunsets each night followed by the infinite cool and intriguing night skies followed by the dreamy sunlight and morphing cloud formations brought me my transcendence from hospital and bodily woes; I would sit, lean, stare, and think...with headphones on, out of the bay window that offered the same comfort way back in April after my transplant. I would stare at the same planes - the same twinkling planes and twinkling stars that I saw back then that would calm and soothe and transport me far away..., yet now I couldn't help and compare the joy I felt back then on receiving such majestic sights - the hope, the excitement, compared with the greyness now that was hindering my vision. Yet the tumultuous night wind would whistle through the gap, calling... opened it would heave through the wide open window and dance around the cobwebs of my mind, scuttling the spiders out; grabbing me and whirling me into the infinite possibilities of life outside my four hospital walls. I will always be content with a view and a breeze.

Dizzy Ravine! and when I gaze on thee
I seem as in a trance sublime and strange
To muse on my own separate fantasy,
My own, my human mind, which passively
Now renders and receives fast influencings,
Holding an unremitting interchange
With the clear universe of things around;
(Shelley, Mont Blanc)

My liver is still perfect. Livers are the most robust organ to transplant, the pancreas (the Islet cells that produce insulin especially) the least. Liv II is still happy and content in there, more than ever. And the rest of the pancreas works - my digestion is perfect and I still don't need enzymes to digest food. I blew my best lung function in living memory - my FVC now 87%, which was a desperately needed ray of sunshine in these dark January days. These aspects of my health are again overshadowing my set back, the numbness that consumed fading and the normal Laura appearing again.

Back home and life is kicking in, a stream of people and things to distract from that torturing stillness that only perpetuates melancholy thoughts. In the hustle and bustle of living insulin is once again just one little part of my life, meaningless and trivial next to happiness... drunkenness.... As much as my solitude and rendez-vous with my thoughts and imagination was needed and rather invigorating, I am embracing all the distractions life has to offer, to escape the reality that haunts the stillness of my mind. I'm now dissolving in Mrs Dalloway's thoughts instead, and am overcome by the beauty of Virginia Woolf's writing. She's a true poet writing through prose; I've marked down every other page, marking passages that overwhelm me with their truth or their beauty, or both. Im now starting to think it'd be easier to mark down the pages that don't contain something of note. She's such an ace reflector of consciousness and thoughts, writing with as much beauty as Shelley or Keats the workings and wonder of all her characters minds, with such acute accuracy and poetic poignancy that you feel she's reached deep inside your mind and has described emotions, thoughts and feelings you'd never even registered before yet ring so true.

I'm grateful to have such a loving network around me when things get a bit shit, I've had a stream of visitors, calls, texts, messages, outings... fun distractions is what it's all about. Keats' "O! For a life of sensations rather than thoughts" has never seemed so relevant - I'm off to live, to explore, to experience... and overpower and forget about (temporary) debilitating set backs with an onslaught of hardcore joviality.




"Fear no more, says the heart, committing its burden to the sea, which sighs collectively for all sorrows, and renews, begins, collects, lets fall."

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. 

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.

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...  

Jaws without the shark

Wahey guess what treat lays instore for me tomorrow? I'll give you a clue: it involves cameras, drugs, and bang on trend clothing.

Naah don't be silly it isn't a super cool Abercrombie model party in the sparkly sordid depths of a Mayfair club, it's an endoscopy! Duh! (Oh i've missed that sexy hospital gown.)

It feels like i've only just recovered from the one two weeks ago, and I SWEAR, if this one stops me from consuming any more delicious KFC chicken shaped calories, i'm not going to be a happy chick (lols, see what I did there?). As tasty as tomato soup with whizzed-in hot dogs sound, it wasn't really that enjoyable. Funny that. And my GP has been ridiculously incompetent in ordering me the high calorie milkshake supplaments (they're just a bit floppy in ordering any of my meds - one tub of creon and one blue inhaler for a two month supply? Deekheads) so i'd rather not have to rely on their haphazard attempts at DOING THEIR JOB to avoid starvation and malnutrition. (I know I can buy milkshakes. But I like free stuff.)

I'm hoping there won't be too many more of these tedious procedures - I don't want to jinx anything, or get too optimistic given the completely unpredictable nature of transplants, but i've now been waiting 3 1/2 months, and I was told the average wait for me would be about 3 to 4 months. It's quite a short waiting time due to me needing multiple 'bits', and being on the national register. Though liver waiting times are significantly less than lungs, for example. Every time I have something done such as an endoscopy or vitamin injections, even when i'm doing my insulin or taking enzymes at dinner, at the back of my mind I always wonder if, (and secretly wish that) this'll be the last time. Normally I try not to have those thoughts because it's a sure way of preventing my phone from ringing, hence the 'secretly'! And then I get all schizo and pretend to myself I didn't think that... when I did. And I know I did.

The other things I wonder:

- Will I get my call before Big Brother finishes?
- Will I get my call before I finish my book?
- Will I get my call before the Olympic closing ceremony?
- Will I get my call before Carnival?
-...before my mum's b'day (sept 7th)
-...before my bro (Sam) goes to Uni?
-...before we finish the bathroom?
-...before I go to see the Paralympics? (I know!)
-...before I ever get round to tidying my room?
(These ones, minus the last, I want my call to come after!)


This is a bit of an aside, but I feel like putting these quotes in because they're hilarious. From this article about the writer Will Self.

The coffee pot boils, no doubt in a deliberate attempt to impose dull, naturalistic order on the contemplation of what it means to exist. Self unfurls himself from his ergonomic computer stool and gingerly removes the pot from the stove using a grubby towel.

"I always start with physicality when I'm writing as a woman. So I always have a vagina and think about having periods. I always start with an embodiment. And I think when I read men writing about women, they never seem to have thought about that. They've never thought: actually, you've got a cycle, you're different. So if I do succeed at all, that's what it's down to."

He is already beavering away at his next novel, the working rubric for which is, he tells me, "Jaws without the shark". 

Inferno

Last wednesday I had another endoscopy at Chelsea, just to check again for any varicies (popping out/ leaking blood vessels in the food pipe), and if all the previous ones are still holding and A.O.K. The actual procedure was pretty all right - sedation, dimmed lights, nurses holding your head... it's all quite relaxing in a non-relaxing sort of way.

As I came round afterwards, there was a big sort of muddle, and I ended up chomping down a sandwich as I was told it was fine to eat. It wasn't. Short story short, my food pipe has been agony ever since. I haven't been able to eat or drink without having immense pain afterwards and a sort of reflux/heartburn sensation. Even eating tiny wee morsels of food and sipping drinks it's been hell. My appetite hasn't diminished, so it's proper torture. Friday night I said FUCK IT and got 3 pieces of fried chicken, chicken wings, chippies and a coke for din dins whilst slobbing out in front of the opening ceremony, and gobbled it all up despite the intense after burn. Yes yes, not wise at all. Fears of having lost weight and hunger made me a desperate chick.

Saturday night everything got stuck sort of half way down, and instead of slipping down after a few mins, it just got worse. Big cough to chuck it all up again and out comes not only a lovely chomped up half a sandwich, but loads of blood. Oh fuckity. They always ask me "have you vomited blood?" and woohoo, now I have.

Yesterday I went to A&E which was long and tedious and nothing really happened. All my blood results showed I wasn't actively loosing blood (yay), and blood count was pretty allright (yay), so they just sort of forgot about me - or really, fed me to the lions a.k.a psycho grannies on Acute Assessment ward. Oh joy. And I wasn't allowed ANY FOOD WHATSOEVER.

Today my nurse was a lady who used to be at the Brompton, so we had a good old bitch about it, and about crazy geriatrics, and endoscopies, and clueless pharmacists. She tried her best to get something to happen in the midst of a serious lack of doctors but to no real avail, however eventually I spotted Dr Steel: gastro doc extrordinare and endoscopy pro (it wasn't his fault, I blame agency nurses who don't read notes and me obviously residing in the 3rd circle of hell. See pic.). He was like a breath of fresh air clearing out the dead cobwebs of misinformation and hospital ward mismanagement, telling me straight away what was the problem, why it happened, and what I should do given that I thankfully haven't continued to lose any more blood in serious or grotesque circumstances. "Go home!" said he, "and eat nothing! Only liquids and nothing but from now until no pain is felt!" Food pipe has basically been narrowed considerably given all the banding was done in the same place, and the protruding tied-off dead varicies haven't fallen off yet, so it's even more narrow. Everything I swallow either gets stuck or has to push past these tender varicies, and because I had been eating it's made everything bleed and irritated. I imagine my oesophagus is a bit like Dante's hell. Gets worse as you go down...! (Rejection of sin? Rejection of food more like.)

Looks like a food pipe, right?

Now I have all my meds in liquid form (can't bloody wait to taste those monstrosities, can you imagine!? Liquid cipro?! EW) and a fridge full of Mars Refuel milkshakes and Oasis. I've given my current KFC, pizza, and steak&chips cravings a raincheck (without much luck to be fair), and instead will experience the extreme dieting lifestyle. Extreme dieting, high calorie style. Of course.

I was sort of hoping they might do another endo, and then I could miss my clinic at the Brompton tomorrow. No such luck. I just don't think i'm that lucky.



Update as of 12am: I'm never attempting to have liquid medicine EVER AGAIN. *shudder*


Update as of 31 July: Went to clinic, had a lucky escape with a surprisingly good lung function (76% FVC) despite having a nasty chest, a residual cold, and hardcore week! Really thought they were going to keep me in. I think the new lung function machine is the root of this surprisingly brill blow as my chest was rumble grumble city. At least this gives me a chance to get beneath this temporary cold induced cough and fling it out into the stratosphere without jepordising transplant availability. Lots of high cal supplements to take (YUCK) to make up for inability to eat solids. Short term pain for long term gain. Oh jeez...

Clinic, podhaler, and CAKE

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

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

Pictured on bed. See what I did there?!

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

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

I Camb(ridge), I saw, I conquered.

Finally got released from Addenbrookes hospital today! It wasn't the worst hospital stay ever - actually, I quite enjoyed it. I succumbed and payed for those bedside television bundle things - something that the Brompton gives you for free and that I usually refuse to pay into because HELLO you should be able to watch TV in hospital without paying extortionate prices! But anyway I went all out and got the 5 day mega super cool bundle which had so many films - it was heavenly! Last night I watched the new Johnny English -

BIG MISTAKE.

I was in stitches and crying with laughter the whole way through, fluctuating between sheer joy at Rowan Atkinson's genius and utter guilt at annoying the hell out of my ward buddies. As I had headphones in, of course the ward was deadly silent apart from my coughing-come-raucous laughter. I had to turn the damn film off and watch like Emergency Bikers every 5 minutes to re-zero my escalating hilarity. Hospitals make you go cookoo.

Apart from watching films, the week was spent being shipped off for an ultrasound, an MRI, an endoscopy (yes ANOTHER FRICKIN ENDO), being squished full of Meroprenem (an antibiotic I never have!), and being squeezed dry of blood thanks to the phlebotomists in maroon uniforms and the nurses checking my blood sugars at every possible moment.

Ultrasound was same old shit. Sort of. Nobbly liver, fat spleen, a miniscule dot of fluid. I've had so many ultrasounds recently I can't remember when they found this little bit of fluid, but yes, it's happened. I have fluid. 4cm ish right at the bottom of my abdomen, and on this occassion another tiny dot just under my liver. They also said my spleen was now 23cm - 3cm bigger in 2 weeks? I'm hoping one of the measurements was calculated wrongly and that it hasn't expanded that fast...! Apart from that they did find a lump in the middle of my liver. Got a bit scarred thinking it was like, cancer. Imagine - all this, and she ends up getting cancer. Honestly. This then led to the...

...MRI, which I absolutely hate. It's all the holding your breath, lying flat stuff which I can't do. Last time I was coughing blood (or trying very very hard not to) the whole time, which resulted in a complete waste of an MRI as they couldn't see a thing. I was more prepared this time - I was propped up on pillows and had an oxygen mask so I could hold my breath for longer. I was trying to remix Abba songs in my head to the beat of the deafening and really quite intimidating buzzes, but not even Abba could drown out that aural monstrosity. They saw the lump wasn't anything too dodgy, just a very odd scarred bit.

They found another varicie to band in the endoscopy - obviously the pressure in my arteries/ veins keeps rising. Slightly worried that they'll keep popping up, and there's nothing I can do about it. I just hope I don't get another big bleed because that would suck, and my life would involve endoscopys and fasting and blood transfusions and mushy food on a weekly basis. Saying that, I did by-pass the mush and head straight for the chicken nuggets after the procedure, on the promise to mum that I would chew every nugget a million times. The endoscopy department was the most incredible place - I was wheeled into this waiting bay that was about the size of a cathedral (but not as tall, obv), and along the sides were curtained off bays, each one with a bed. It was like Auschwitz crossed with a chicken battery farm in it's disturbing, clinical sterility, but in a bright pastel-hued almost utopian heaven. (Messed up? Sorry.) Down a corridor paralell to the longest side of the room was room after room of endosopy suites that continued for what seemed indefinitely. Mass production applied to healthcare. There was something quite Kafkaesque about it - if you've seen the 60's film version of The Trial - it was a bit like that. I know i've painted quite a contradictory picture of this place - I simultaneously loathed and loved it, intrigued yet repulsed... awe-struck for sure.

The meroprenem antibiotic was given to fight the infection that they suspected was somewhere in my body and that was causing me to turn yellow. They never found the infection, or sepsis (whatever that means), but the drug did the trick as my Simpsons hue slowly faded to daffodil to buttercup to primrose to sunshine to sick to mushy banana to 'is there something odd about that girl?' ('Probably?').

You get the idea...

I'll quickly write about the hoards of student doctors that were sent my way -  obviously I must be an interesting case as a constant stream of med students came to poke and prod me, to ask about my CF and my liver, to rummage through my meds... they all seemed quite fascinated, and would return the next day with a friend or two ha! I think they were quite impressed with my knowledge of med stuff, which I suppose you naturally accumulate living with a multi-system thing. Endocrine, respiratory, digestive, circulatory... CF is simply amazing in how it's annoyingly shit tentacles reach and affect every branch of almost every system in the human body. It's shit, but my god, I know a lot! Never really realised it, but when the final year student docs ask you questions about why this is affected and how, and you can answer them, it makes you feel quite bloody good!

I had one student who did a trial exam on me - she was asked to do a respiratory examination. At the end she basically said, if it wasn't for the clubbing of the fingernails which indicate a chronic lung condition, she wouldn't be able to tell I had anything wrong with my lungs. GET IN!!! I LOVE it when that happens. Puts a massive grin on my face and I couldn't wait to tell mum that all her hard work when I was young paid off, and all MY hard work paid off too! Wait, is PAYING off!

Well anyway, i'm home, liver levels are a bit more normal than they were (one test should be under 17, mine was 300, hence the jaundice), and my appetite is back to it's brilliant normal self. I'll miss the Burger King downstairs, but nothing beats home-cooked food. Obviously.

Insulin bruises thanks to my spleen and its non-clotting ways! Yuck.

Toesies! Yuck.

Yellow!

Woke up this morning - I AM COMPLETELY YELLOW!

Skin, eyes... oh my god.

Brompton are going to be in for a shock! I look horriffic!



That's it. Thought i'd share my liver failure.



UPDATE as of 6pm - back from the Brompton, no IVs. However, Dr Gyi just called and apparently I DO have jaundice - the yellowing of the skin and eyes that comes with liver failure. Liver function tests were shocking apparently. Goddammit! Dr Gyi didn't believe me in clinic (because, hello, the lights are yellow?!), but has eaten her words and is sending me over to Acute Assessment Unit at Chelsea + West for some tests etc. 


I. Can't. Believe. My. Weeks. 


:(

Made (again) in Chelsea

First of all, I can't wait for Spenny to be the new Bachelor on Channel 5. Thought it was starting today but my aching heart must wait another 7 days for that car-crash-so-bad-yet-so-unbelievably-watchable series. I bet he's going to be a right nob, but hey, isn't that why we love him?!

Talking of Made in Chelsea, I was re-made in Chelsea this week. After coming home from the last A&E visit of previous post, I was back down to the Fulham road the very next day with all the same symptoms. Another endoscopy, and they found a tummy full to the brim of blood and 5 bleeding varicies as the culprits. They were banded with elastic bands to stop any more bleeding by the lovely Dr Steel, who later said to me "I'm never giving you that much valium ever again." Dammit. Bloody worked though, don't remember a single thing unlike the countless other times of retching wretched hell.

They then continued to ply me with drugs to stop this that and the other - antacids, fluids, beta-blockers... anything to reduce the pressure in my portal vein. Beta blockers are never given to chest patients because they cancel out all the broncho dilators (which are beta-antagonists - god you get so geeky living with this), which I bloody need! My chest was tight as hell, and I swear it took them 3 days to order a new blue puffer for me. Wankers. I was also given IV cipro. I am never having that ever again! Cipro in tablet form are known for their crippling tummy aches, but IV's are a whole other ball game!! Never have it! Those of you who have - you know. Think running to the loo. Fast. Eventually I refused the cipro, to junior doctors' horror. I never refuse treatment because I know in the long run it'll do you good, but I did. Took tablets instead. (compromise!) I wanted to refuse everything else, because I was in one of those jaded, discontented, pissed-off moods, but I knew I needed the three days of the reducing the pressure meds if I wanted this whole trauma to stop. They also made me really queesy, and the anti-nausea drugs made me feel EVEN MORE nauseous! I don't get that at all.

After the first day my haemoglobin was hovering around 6 (should be 10). Just before they knew this they sent me down to have a liver ultrasound, and I passed out while waiting for the porter to take me back up again. 1 day and 4 units of blood later I had regained some colour in my cheeks, and was feeling much perkier. The 'hovering mass of freckles' Laura finally had a background on which they could be placed. Not so Twilight-chic, which is always a good thing. I was really quite worried though because since Sunday night I had had hardly eaten or drank anything  - I think because I was feeling so sick on the meds and, well, i'm not really sure. A tummy full of blood maybe? After the banding I wasn't allowed to eat for almost a day, and my food pipe remained unbelievably tender for quite a while... but even today i'm struggling. I managed some thai coconut soup and a bit of sticky rice from my fav Thai place, but it startles me how my appetite has diminished. I really hope it bounces back super quick, otherwise i'm in big trouble with Addenbrookes, and the Brompton of course.

Addenbrookes were aware of all that was going on - Chelsea and West phoned them constantly regarding what was going on - do you think they'll bump me up the list if they knew my liver is failing like this?! To be honest i'm not sure how long it can hold on - this happened quite out of the blue and I suppose it could happen again at any time. My ultrasound wasn't pretty - 20cm spleen, 14cm distended portal vein (yeah wtf?! surely they mean lengthways not width, otherwise that's craaaazy big) and my liver has so many scars and nodules and bumps. Thankfully STILL no fluid - it'll be a sad day if/when I start to get fluid. I think i'll pop.

I hate to think that some people bring this upon themselves. Drinking related liver disease and whatnot. Surely if people knew how traumatic, uncomfortable, painful, tedious, AWFUL this is, they wouldn't do it! But people know what smoking does, yet continue to smoke. They know drugs kill, but continue taking them. Once you've reached a point of pain, it's too late. It's sad. I would never wish this upon anyone. I'm often cynical "yeah they brought it on themselves", but it's hard to stop when you don't actually know what it feels like to hit that wall at the other end. Lucky are those who can jump over it or break through it, but many many don't, do they?

Saying that, I often think about drinking post tx. Haven't decided what i'm going to do, maybe it'll become obvious. Maybe i'll be a changed wee lass and be all "life is amazing I don't drink I just drink naturreeeee and all it's beautyyyy!". (Yeah the Romantics said that but still drank. Just think of Byron. Hardcore leg-end.) But if it works, why not give it something to work for? I'm never going to go bonkers - I think that'll be really bad taste - but i'll treat it to a g&t or two every now and then... everyone loves a g&t every now and then. If you don't... um... hello?

A check up

Had a 'waiting for transplant' check up at Addenbrookes today. First thing, it's unbelievably quick to get to Cambridge from where I live, which is always mighty re-assuring! At the beginning of this process I kept having nightmares about getting THE call and not being able to get there soon enough and missing the organ. Shudder.

There is one thing that does worry me however - I was told that if i'm on IVs and I get the call, they won't go ahead. Ah! I knew keeping my lungs well was important, but didn't quite realise it was that serious. I haven't had any IV antibiotics since december, and my chest has been pretty tip-top since then. Just got to hold up for a little longer. Sometimes the Brompton piss me off, because they maintain their stance that they won't overload me on antibiotics "because it might damage my liver." (Insert another raised eyebrow.) This may seem blunt, possibly short-sighted, but I don't care! I'm getting a new one anyway - but I won't if you don't ply me with drugs! I understand where they're coming from ie don't know how long i'll be waiting, but it's just a little frustrating. I don't want to miss my opportunity. I'm a B+, so only 8% of the population is compatible. Take away another 3% due to size. That isn't a lot of matches...

So i'm keeping well clear of the Bromp. And public transport. And anywhere there may be bugs. In fact, tomorrow I start making one of these:

Bubble Boy!

The doc also seem surprised when I told him how excited I was. Apparently no-one has ever said they were excited... Am I just odd? I know how people can be scared, apprehensive... yes of course i'm a bit of those, it's a major thing. But surely people must get excited at the thought of what new and wonderous life is waiting just around the corner! The odds of not surviving is 1 in 6. That's daunting. A game of Russian Roulette. But surely the allure of playing Russian Roulette is the excitment? I'm slightly tentative comparing it to that, because you probably all think i'm a lunatic adrenaline junkie. It is different though, because a gift of a prolonged, vastly improved life is what i'm gambling all for. And for that, it's a risk i'm willing to take.


P.S. I'm hoping they just gave me that statistic to stop me from wanting new organs... 3 organs must mean a lot of work for the poor surgeons. It'll be a long night for them! I'll be fine somewhere far far away in a drug induced cuckoo-gaga-land...