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!


  1. I'm a sputum phobe too. I swallow the stuff unless the physios nag me and nag me for a sample, and only then can I do one... as long as no-one is watching! I don't even want to think about what my face is doing when I'm trying to spit it up without retching. It's ridiculous because I'm so productive, I just find it easier if I swallow it. My tummy disagrees though and I feel constantly sick but it beats looking like a cat furballing to spit it out.

    What a roller coaster! You've done amazingly well though. Look at that flat tummy!


  2. You don't sound like you're complaining at all! People moan about a lot less, you've really been through it. Glad things are on the up, I can imagine how weird it must be to not need creon! And yes, definitely be proud of your scar, it'll fade loads over time anyway. I have a massive one down the whole of my spine from spinal surgery when I was 14 and bio oil really helped. Can barely see it now! xxxx