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.

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...