Thursday, 12 December 2013

Winter chills

Things have been busy since I last posted - I even forgot about this little blog until I was kindly and lovingly reminded about it at the other night at the pub!

I've been applying for graduate jobs within advertising, and got to the final interview round at top ad agency AMV BBDO - not bad for my first ever job application. Sadly I didn't get the job, but getting to the final 25 out of 1500 applicants in pretty awesome, and has definitely not dampened my verve to continue applying. The final interview was a toughie - 12 hours of breakfast through to drinks and dinner, with an Apprentice style advertising task in the middle dotted with relentless interviews and presentations. I'm now applying for internships within advertising - money or no money i'd just love to get my teeth stuck into something juicy. 

Other big news - my jej feeding tube is out! It's been giving me stick, and I've been gaining weight without it (I reached 47.something kg!) so at the gastro clinic the other week I made Dr Westaby yank it out. It's a wonderful feeling of freedom, and after 10 months I'm finally tube free. The only ghostly memory of the transplant is the fading scars - and fading they are.

I've also gone and chopped all my hair off. Transplant anti-rejection meds have been causing havoc with my hair, leaving it a thin, whispy and damaged mess. It was so thin that all together it was as thin as my little finger. It was getting me down terribly - it used to be so thick and luscious that I now felt a shadow of the Laura that once was. So it's now a super little bob, and I love it. 

Real life problems, niggles and dilemmas are beginning to seep back into my life again, which as much as they're annoying, are a refreshing reminder that normality isn't just a faint hope anymore. I think my bubble has finally broken, and in flows reality. I love that flippant things like jobs, men and wine are a thing again (flippant? Really Laura?) and health isn't constantly at the forefront of my mind. Saying that, my chest still feels slightly temperamental, but I did blow my best ever lung function in the recent past last week at clinic, WELL chuffed! 

Things are exciting, things are fun, and even despite litte dips things are good. Even with set backs, better and more exciting things are always there to take you by surprise, and keep things sparkling. 

Tuesday, 8 October 2013

How soon is now?

It's tuesday. And i'm not in the Brompton - i'm at Addenbrookes. Thursday night at 7 in the evening (it was aready dark, depressing eh) the nurse came in, rather shocked, and said I need to go to Cambridge as Addenbrookes decided they want to look after me and my cytomegalavirus. The only rush was they had a bed, and werent sure when they'd next have one available. So dad came to get me and took me to Camb (yes, no hospital transport stingy bastards) and arrived at 10pm.

The deal is, it's doing stuff because i'm on steroids (which as well as an anti-inflammatory for the airways, is also an immuno-supressant), which means i'm super immuno supressed at the moment. And because of this, the little virus is having a mini party. I'm coming off the roids (I'm only on them for my chest), so hopefully the virus will settle down and not do much at all once i'm off them. Drama for nothing. I keep getting told how well I look etc, which I know is because of this steroid face haha. Saying that, I DO feel super well - the IVs seem to have knocked the green gunk to some far flung outer region of the galaxy, my appetite is monstrous, i'm full of energy and to be honest, I feel fab. I'm loving it. It may be the roids, it may be the meropenem IV. It may just be me.

Mum, dad and my brother came up to see me on sunday, and we went out for a sunday lunch in Grantchester, a little village not far from the hospital. It's a beautiful little village, where the intellectual elite of Cambridge have forever flocked to, and we had lunch at a pub called the Rupert Brooke, who was a WW1 poet and lived in the town. His famous poem, 'The Soldier', has the famous line 'If I should die, think only this of me; That there's some corner of a foreign field, That is forever England", yet he wrote a funny and swooning poem about Grantchester, with lines from the poem framed in the loo, as you do. My admiration of the hamlet grew when we went to 'The Orchard' - where they serve tea and cakes in deck chairs under apple trees, bathed in glorious warm sunshine, and the river Cam sweeps by at the bottom of the fields. It was just gorgeous.

"I only know that you may lie
Day long and watch the Cambridge sky,
And, flower-lulled in sleepy grass,
Hear the cool lapse of hours pass,
Until the centuries blend and blur
In Grantchester, in Grantchester. . . ."
I'm a city girl through and through, but the tranquility and serenity of such an idyllic place is enough to make me crave the country bumpkin life... for a short time at least. I could just spend endless afternoons there, grazing on cake and drowning in tea.

Since thursday i've been mostly sitting with my headphones on. It sounds terribly banal, yet for some reason i've been loving it. OK yes i'm confused too. But i'm going to roll with it. Ive been trying not to sing a long (i've failed). But dance, yes, i've danced. A sort of bed dance. I've also been disappearing off the ward much to the doctors dismay, as I bumped into the consultant today in the corridor on the way back to the ward who said "Ive been looking for you all weekend!" (He wanted to tell me he doesn't want me anymore and is going to send me back to the Brompton... if they have a bed.) I get back from one aimless wander, stew for a while, then i'm off again. From the gardens to the tenth floor, from the theatres to the concourse, my music fuelled explorations hold no bounds. Late night ones are the best, where it's deathly quiet and hauntingly eerie, and the corridors are mine to fill as I wish. I just have incredibly itchy feet, an explosion of impulsiveness, boundless energy, and a lust for the now - a 'now' that's just out of reach. I just want to be let out and I want to go places and do things... and well, the Smiths, as always, say it perfectly:

"Take me out tonight where there's music and there's people and they're young and alive. Take me out tonight, cause I want to see people and I want to see life. Take me out tonight, take me anywhere I don't care I don't care I don't caaaaaaaare!" 



Friday, 27 September 2013

Deja Vu

2 and a half weeks ago I told the doctors, "If you only give me 10 days of antibiotics IVs, i'll be back in 2 weeks!" 2 weeks almost exactly after I was discharged from the Brompton hospital, I'm back in.

To be honest, my gunk started turning green the day I was set free. I waited a couple of days, then started cipro. However my usually magic oral didn't even touch whatever was down there, and the last few days have been really hard work. I woke up this morning fighting for breath - which was pretty good timing given I called the Brompton on wednesday saying I need to be seen ASAP and was booked to be seen on Lind ward this morning.

So here I am, after a day of bloods and x-rays and coughing up crap, sitting in room 28A, gazing out onto the Fulham road and the vast luxurious smorgasbord of sky that kept me so sedate over my 2 month admission back in April. And it hasn't disappointed yet - a deep orange sun cast its pinky orangey glow right into my room, as mini splatters of clouds scattered the whole canvas. There's something oddly calming that i'm back reunited with this familiar view - I suppose being so high up and seeing such a vast expanse of sky makes me feel as if i'm not so restrained, as if i'm not missing out on so much of the world from my ivory tower as its all here, right in front of me for my eager to eyes to peer at endlessly. This view has now I suppose also become synonymous with recovery and getting better - I know when i'm here i'm in good hands.

I'm being given meroprenem this time, which worked wonders when I came in a month ago. They've decided not to give me any anti-fungals as I haven't grown any in ages and it's only been 2 weeks since I stopped my last course. There was discussion as to whether this exacerbation was due to the Cytomegalovirus (CMV) which my donor had, as the anti-virals I was on to suppress it was stopped 2 weeks ago, and weirdly my CRP (infection level) isn't too dire. I haven't been at all coldy or fluey (which I was told would happen if the virus became active in my body), and Addenbrookes have said hold off on giving any anti-virals just yet. The blood test that indicates whether the CMV is active doesn't say how much of it is active, but it is. We're hoping as we treat the infection the virus will just do its thing and buzz off.

Im pretty glad to be back here - obviously not really, but I hope this time it'll sort me out good and proper so in a few weeks I can be back to getting on with LIFE. I'm pretty pumped about stuff at the moment, but there is a good lull these few weeks where i can just concentrate on getting back to tip top condition. This lust for life probably hasn't helped my cause (are you singing Iggy yet?) as i've been dashing about across London (and beyond!) for the past 2 weeks like a loony. I probs got loads of germs. Its this huge moral(?) dilemma isn't it - do you stay healthy and sit in your bubble at home, or go out and do fun stuff but risk getting run down? It's a fight i've had battling out in my head the last 24 years (um technically), though of course I didn't think about important stuff until I was at least, um... i'll go with 23. I lived a blissfully ignorant life until I started drinking and staying out late and realising 'If I go out clubbing without a jacket and drink loads and then sit on the beach and don't get home until 5 yes I will be coughing the next day'. LIFE EH. (That wasn't when I was 23. 23 is a lie.) I still blindly and lovingly follow the Keatsian mind set: "O! For a life of sensation rather than of thoughts!", though it didn't suit him very well now, did it... (I think where I and Mr Keats differ is that I would now have brought a better coat and waay more layers if I went walking through the Lake District. In winter. Silly boy.)

Now the sky is a musty inky blue, with a single glowing white cloud in the middle and the flashing red lights of a plane sailing off. Recently i've been desperately hoping I could escape somewhere for a bit - i've been secretly planning trips in my head, wondering if they could become a reality. This bubble was somewhat burst when I realised you have to wait a year after transplant to go anywhere abroad, so I suppose i'll spend each moment watching planes planning somewhere I can escape to in February - a year after my transplant. Those flashing red dots are so alluring!

Anyway, as I haven't really got dressed or brushed my hair or done my make up for 3 days, this is the only 'allright' picture of my NEW HAIR COLOUR! I had so stay red, it's just a bit deeper. It's a semi-permanent, but tempted to go permanent... whaddya think?!

Tuesday, 10 September 2013

Portrait of the artist

The initial 10 days have now turned into 2 weeks, with my release date from Hotel Brompton being Thursday. I'm only on one anti-fungal drip a day since they stopped my antibiotic, and they're not even sure I have the dreaded fungus, so it feels like I'm locked in a hurricane shed for the fear of a slight easterly wind. Yesterday, as from the confines of my room I tried to round up doctors and head nurses (to no avail) to get their arses moving on whether they'd let me home, 10 days of confinement proper started to grate. The allure of home faced with the impossible task of organising everything when I can't even leave my room was too much and I made a baby doc stutter and literally run from my room. In 8 hours the whole motley crew of nurses and doctors and consultants couldn't communicate together and decide whether I could leave and come back an hour a day for three afternoons to finish the course. Evening hand over came and the languid and dismissive attitude of all involved left me in a slump, relegated to the fact that yep, I'm staying here.

No fear, another film, reading Dorian Gray and listening to Quadrophenia in the early morning seemed to chill my tautly strung nerves, and I found myself lulled into a weirdly tranquil and serene mood. Even though hospital is a drag, I find great comfort in having a room filled with all my basic yet indulgent needs, me time, and an unexplainable feeling of independence. I imagine this is my own studio flat, with vaulted ceilings, big TV, and not a care nor responsibility in the world. I strangely love it. I think it's about embracing the inevitable entrapment, and realising this wont be forever. Once you have that, all you can do is enjoy it. I don't feel alone, my phone is constantly by my side, with voices and words filling almost every minute of every day. I love whatsapp. And lovely texts and of course snooping in on the twitter world. I also have my bike and music TV, and meals served just at the right moments. I finally watched Almost Famous and 500 Days of Summer, both which made my heart tremble a little bit. 

Saying this, I have no idea how I managed 2 months here in April, but it must be a sign I'm feeling good. I can't wait to escape, I have so many things I want to do and people to see; right now I'm bubbling with excitement like its the first flush of spring, I think I'm the happiest I've been in quite a long long time. I want to buy an autumn coat and dye my hair, I want to rinse my travel card dry and maybe be promiscuous in the rain again at 1 in the morning... this time dressed appropriately!  

Every time I read Dorian Gray I discover new little gems. I've just read a passage that goes "I have grown to love secrecy. It seems to be the only thing that can make modern life mysterious or marvellous to us. The commonest thing is delightful if one only hides it." So on that note I'll keep my serendipitous moments a secret, to keep them even more delightful. Life's all about little pleasures. 

L x

Sunday, 1 September 2013

Ripeness to the Core

It's september! Mind-blowing! These months have passed so quick, it's odd to think that soon the leaves will be turning, and autumn will once again grace us with it's magical presence. I love autumn. I love everything about autumn - the temperature, the colours, the sunshine... Many of you will know my twitter name is @mapleleith, where I have a romanticised notion that I have hair the colour of maple leaves (and my middle name is leith). I don't, but there's still something autumny about ginger hair, when it catches the light (The only time it looks awesome). All the colours are just so yummy - I have a collection of red/brown/auburn/maroon nail polishes the size of a small shop, and seem to throw on all the autumnal reds and browns no matter what season. So nothing makes me more happy than to have an environment where I finally look in place and matches my subdued taste! Autumn is underrated. Think of september weather - it's full of glorious sunshine as the Indian summer extends its sun right through the changing leaves. But even when it's dismal it's magical - mist and fog and rain become something out of a painting when framed by those autumnal hues. I can't wait to find my boots, my wooly jumpers, my scarves, my coat, and breathe in that crisp air. I like having a chilly nose too.

Season of mists and mellow fruitfulness,
   Close bosom-friend of the maturing sun;
Conspiring with him how to load and bless
   With fruit the vines that round the thatch-eves run;
To bend with apples the moss’d cottage-trees,
   And fill all fruit with ripeness to the core;
      To swell the gourd, and plump the hazel shells
   With a sweet kernel; to set budding more,
And still more, later flowers for the bees,
Until they think warm days will never cease,
      For Summer has o’er-brimm’d their clammy cells.

Who hath not seen thee oft amid thy store?
   Sometimes whoever seeks abroad may find
Thee sitting careless on a granary floor,
   Thy hair soft-lifted by the winnowing wind;
Or on a half-reap’d furrow sound asleep,
   Drows’d with the fume of poppies, while thy hook
      Spares the next swath and all its twined flowers:
And sometimes like a gleaner thou dost keep
   Steady thy laden head across a brook;
   Or by a cyder-press, with patient look,
      Thou watchest the last oozings hours by hours.

Where are the songs of Spring? Ay, where are they?
   Think not of them, thou hast thy music too,—
While barred clouds bloom the soft-dying day,
   And touch the stubble-plains with rosy hue;
Then in a wailful choir the small gnats mourn
   Among the river sallows, borne aloft
      Or sinking as the light wind lives or dies;
And full-grown lambs loud bleat from hilly bourn;
   Hedge-crickets sing; and now with treble soft
   The red-breast whistles from a garden-croft;
      And gathering swallows twitter in the skies.


Here's Mr Keats' To Autumn. I love his personified Autumn; an oozy goddess, both busy and productive yet deliciously indolent. Nature is saturated with goodness and Autumn's spell is cast - the fume of poppies lull us to watch the "last oozings" as this drowsy haze envelopes us. There she is, strewn in the barn with her (obviously red) hair blowing in the wind. Many poets see Autumn as the harbringer of death, and I suppose it is. But I love it, and it feels exciting when seasons change. And I think Keats fuses these two notions - that autumn is as much about harvesting growth and beauty as it is decay. I never mourn the end of summer - if I could live in a world where there was Autumn all year round I would. Though of course if that was possible you'd miss the leaves changing colour and the cool crispness arrive, which is the best bit. Autumn brings with it it's own excitement and it's own adventures, and hopefully my autumn will be exciting but with that necessary slice of indulgent indolence thrown in. (Think cake and films round the fire mmmmmm)

Autumn (1898) William Stott

I like this painting of Autumn. I think it's a bit like Keats's lady Autumn. It think it's also a bit like 'Autumn got waaay drunk off homemade cider went to lie in hay and lost her shoes.'

Autumn Leaves J E Millais
And I think Millais knew what Autumn is really for. Jumping in massive piles of leaves. GO'ON MILLAIS.

My summer said it's final goodbye as autumn has heralded in a stay at the Hotel Brompton. I caught some lurgies (I was being promiscuous and got caught in rain at 1 in the morning), and consequently my voice disappeared and my lungs filled with beautiful green gunk. Some cipro nipped that in the bud over the long bank holiday, but I still have a tight chest, temperatures, and episodes of throwing stuff up. It was one of those admissions from clinic which hasn't happened in years, and it's quite adventurous! I'm being hit with steroids, fluids, meroprenem and an anti-fungal in case theres some of that lurking in the hidden depths, and people have to enter my room wearing full on nucleur war gear (apparently they're protecting me as my white blood cell count is low, but I can't help but fell dirty AS.) I'm hoping this is only a two week jobby, which would be dreamy - better than 2 months! I'll keep you updated on nucleur warfare (think ET), until then i'l just be chilling in my Brompton bubble. Enjoy the last of the summer wine, but don't despair, we have gorgeous times ahead.

L x

Wednesday, 28 August 2013

Territorial Pissings

I think I should do an updated version of my transplant for you all to read, a version where I pander to this attention seeking trend. I'll put in all the terrible parts, the parts where I was in tears both for pain and despair, and just how terrible I really felt. I don't write about that shit because thats just a part of it, of course you're going to feel terrible. But maybe if I did people would realise what I went through was huge. It was massive. But the fact I had a transplant that wasn't lungs seems to simmer down in the lowly ranks compared to the awe and glory those having lung transplants receive. When will people realise that CF isn't just about lungs? That a lung transplant isn't the hardest thing anyone with CF will contend with? Try having an operation just as big - arguably bigger (definitely bigger) - and have shit lungs to contend with. The narrow mindedness of some startle me. You may shit on me for saying this, but a lung transplant is piss easy compared to what i've been through. I wish people would realise this. It's one of my pet hates when people think CF in a lung condition. It's not. Now try having a 12 hour operation, another 4 hour operation, 2 general anaesthetics, 3 new organs, 4 months of recovery in hospital, all the time not being able to breathe. It'd be a breeze if you had sparkly new puffers to wake up to. I'll undoubtedly get slaughtered for writing this, but I actually don't care. I feel as if I had succumbed to this attention seeking-whoreish nature some have taken upon themselves, more would realise what I, and many others have gone through or are going to go through when livers pack up and die. Instead we're left with the same culprits and their hoards of fans who throw around words such as "inspiration" and "hero" at them, giving the impression they are better/ stronger (or sicker and more worthy of sympathy) than others going through similar situations, when in reality everyone, even those with lowly liver, pancreas, intestine transplants are equally as heroic. (We are! Though how it's heroic to not die is beyond me!) We ALL cope with shit, and arguably better than the ones who plaster it all over facebook and twitter just for the hundreds of comments that will come flooding in afterwards to boost their already inflated ego. I hope it fucking bursts.

Wednesday, 31 July 2013

A very merry un-birthday

It was surreal being back at Addenbrookes last week for my biopsy. I was in the room next to room 23 where I spent the majority of my stay (room 24 now I'm 24!), but the same green rural view. Now however, the fields that before were dusted with snow are now full of chunky diggers as the work starts on what I presume will be the new extension of the hospital. I was only there for one night - my results came back late afternoon which showed slight rejection, but should be sorted by increasing one of my drug doses. A slightly shorter stay than last time eh!

All the slight niggles that were bothering me in the last post seem to have been resolved - I had been started on an aminophyllin tablet which aims to open the airways, and hopefully stop my breathlessness. However the doctors thought it could be that which was making me sick, and on stopping it i've been feeling much more myself. The breathlessness is still an issue - it's not debilitating, however being used to such reasonably dreamy lungs I can't help but feel constrained by this onslaught of tightness. It is an issue, and I seem to now have a constant reminder of shitty lungs which takes its toll mentally. I've been lucky never really feeling like this before, but I can now see how it can prevent you just doing normal things.

It's also pretty safe to say I still have a blob head. Chipmunk cheeks. How long on god's green earth does it take for steroid shit to get out of your system? I've even been naughty and stopped my overnight feeds to see if losing weight will help, but it's the same. Chill, i've re-started my feeds now like a good girl. My appetite seems to be slowly creeping back too which despite the mental tug-of-war with my weight, i'm really pleased about.

Continuing my naughty streak, I didn't renew my gym membership so havent gone to the gym in about 3 weeks. What I keep telling my mother is that it's just too hot. That is a perfectly acceptable reason. I don't want to drown in my own sweat or, I dont know, get heat rash? I think it's fatal. Thankfully, as I write those grey clouds are closing over, the sun is deciding that torturing us was fun while it lasted, and drops of rain are starting to land on my window. These few days of rain and storms have heralded in the cooler weather, and therefore the start of Laura being good again. (I think?)

I won't completely shit on the summer; my favourite part is lying in bed at night, windows and blind wide open, watching the sky and feeling that very welcome breeze. I normally sleep with my blind closed, but I now find myself counting stars, watching planes that are like stars on steroids and the surprising speed in which milky grey clouds stream across the sky. Then seeing a bug fly in, freaking out and spending half an hour trying to find it and squish it, not always successfully. (Now i'm tethered to the feed pump again i'm thinking I might close the bloody window...)

Anyway, i'll leave you with a picture of probably the best item of clothing ever. Yes, ever. I had my 6 month sparkly bits anniversary last week (mum threw a little party lmao). Happy half birthday LIV II and Panc II and bit of gut II. Hope you're happy in der.

Thursday, 11 July 2013

After the storm...

It's been super being home. I've been doing normal, lovely stuff, whilst soaking up this glorious sunshine. Even if I despise this current heat, the sun has definitely been making my 6 weeks of re-adjusting pretty sweet and sparkly.

I've had a great mix of taking things easy with living life to the full again. Some days I chill with my puss cat in the garden or on the sofa, indulging in wonderfully crap TV, eating ice lollies. Other times i'm whizzing out, seeing friends - I went to the ballet one afternoon on a whim - and cycling round the parks and quite streets near by. I've actually been cycling a lot, my run of low lung functions whilst I was in the Brompton spurred me into this crazy 'get fit' routine, and now I feel bad if I dont go for a cycle everyday. I don't, but nearly! I also joined a gym. I know right. I'll let that soak in, for god knows i'm still soaking it in. Again, it's things like this that lead me to believe the surgeons did in-fact tamper with my brain. That suspicion just grows everytime I embark on another ludicrous notion such as this gym malarky.

A gym.

So there I am, about 3 times a week, puffing away on the cross trainer, or looking like a sexy wet beetroot on the treadmill. Sometimes I despair that i'm the sort of person who goes to a gym. The worst bit is, I cycle to the gym, just to cycle going nowhere in a stuffy grey room (listening to Robin bloody Thicke on the tele) for half an hour, then cycle home. Anyway, all this stupidness is paying off, because at clinic on Monday my lung function was 50% and 74%. My best ever is 60% and 80%. Woohoo! My FVC is only 6% down from best ever! Chuffed OR WHAT. I'm also over the moon my steroids have finally stopped, so maybe the face I once knew can now emerge from the bloated mass that's currently residing on my head. Of course, everyone says it's fine, but c'mon. I know what my face should look like. My weight has also rocketed up to 47.2kg (I gained a kilo in 10 days!), so the shudderingly fragile limbs that I once rocked are slowly becoming slightly more normal looking! It feels great.

It's not all fantastic - despite my awesome weight my appetite is utterly dismal, i'm incredibly tight, I have these weird waves of nausea that no-one can work out what the cause is, crazy headaches, and the initial whoosh of feeling incredibly perky seems to have lulled somewhat and I find i'm gradually waking later and later. At Addenbrookes today, they said they want to do a liver biopsy as my liver levels are slightly raised, and have been for a few weeks. I hope whatever is annoying little Liv II can be easily fixed. I also have a hernia operation planned, though I asked if it's possible without a general just a local anaesthetic, as I dont want another lung collapsing! It is, but he's pleased i'm a "brave lady". I said, "Gimme oxygen and 3 pillows and it's all gravy." We'll see how tough I really am eh! (HOLY SHIT)

I've also been forming plans about what I want to do - as it seems you have to get a job to be a respectable lady these days. Ladies of leisure are on the wane. I think I want to go into advertising, so i've tentatively been hunting for paid internships, though of course getting distracted by cats, and Home and Away. And the internet. And clinic appointments. And sputum. And Big Brother. There's maybe an opportunity to do a paid internship at a Law firm too, so i'll have a think. To be honest i'm in no rush, as i've only been out 6 weeks, and obviously things are still a little fragile. I'm also beginning to realise these so-called 'proper' things dont allow for watching Aussie soaps as a matter of urgency, which is taking a bit of time to get my head around.

It's just refreshing knowing that I can think about these things, and as long as nasty chesty bugs hold off and liver biopsy results allow for an easy solution (pray to the science god), there's not much to stop me. POW. Here's some sexy not so sexy shnaps:

A 'chillin with cat bum' selfie
A 'drinking cocktails' selfie
A 'making the most of a Cambridge clinic visit' selfie

Sunday, 30 June 2013

Checking in

Going for a wander down Blog Post Memory Lane was a surreal experience. 

I'm now worried I'll never have anything so dramatic or poetic to write about ever again. Real life pales in comparison to that upheaval only something like a transplant can bring. 

I have no choice now but to create some scandal, to experience some earth-shattering existential crisis, go on some trip to the moon or summit. 

I have a few clinic appointments early next week, both at the the Brompton and at Addenbrookes, so I'll outline the progress of my smooth sparkly new additions as well as my delicate old ones then, once I have some new exciting info (or not?). It's been a little up and down since I've been released from the safe confines of the hospital walls, but nothing too volatile. It's been exciting. It's been an adventure. There's been a lot of driving...

Saturday, 18 May 2013

Fully Institutionalised

All the negative points about spending nearly 4 months in hospital seem to be submerged by this overriding notion that i've just spent 4 months improving my life. Yes hospitals drag, but every day has been filled with some exciting riddle of how to make things better. It's hugely satisfying. 

It's been exciting, its been interesting, its been confusing, its been tedious, its been frustrating, it's been upsetting and it's been uplifting too, but every little thing (no matter how big or small) has needed to be figured out and fixed, and so i've felt like House for 4 months. Obviously not as old, suave, irritating (questionable), or brilliant, but I find it scarily fun trying to work out how to solve these new riddles my little bod has been presenting me with. I know that's the doctors' job, but i'm not a passive patient. Passive patients are lame. 

The most boring part was when I was on plasmapheresis, because that was just a 2 week waiting game.  But even this long Brompton stint has been a learning curve - my body has changed, new bugs, new hurdles, new complications, new organs to contend with and look after. I've found a huge sense of satisfaction at viewing this as a massive total body rehab, suddenly the tedium of going to the gym has been replaced by this craving for self improvement - I want to leave the best I possibly can, everything as sparkly as my new additions. I was also determined not to leave this joint not feeling good - there's no point spending 9,849,600 seconds in an institutionalised bubble to leave thinking 'what was the point'. After a million seconds they all seem the same. What's another million?

Leaving this structured institution will unleash a whole new can of worms. Such as the 'Where Is The Tea Trolley' worm, the 'Why Is Dinner Not At 6' worm, and the 'Hang On, I Have To Make It Myself?' worm. But they will somehow be overcome. It may take another 4 months, but I suppose it's like a break-up, i'll get over it eventually. Or I won't, and you'll find me either catching coughs or stealing stuff to end up back in a place where real life is non-existant and there very well may be bars over the windows. 

So yeah it's exciting but also scary, maybe it's suddenly being presented with time, space, reasonable health and an Alladin's cave of options that is the most scary. And I do leave with health - a lot of it. My lung function is only down 15% from my stable best (ever), and without any other liver or diabetic problems and complications to contend with, i'm pretty super chuffed. It's unreal. (Is that all I can think of to write?! Yes. Words suck at this.) As they say, the world is now my oyster, and with a free oyster card, I have a bloody good oyster to explore! Funny... i'm not allowed to eat oysters. 

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!