Clinical Trials and another week down.

Sorry it's been a week, my tactic of letting the days go by without noticing is maybe working!

I seem to have been on the phone with Kings College Hospital all week about various things. Firstly, on Thursday I had an appointment to discuss my participation in a clinical trial of a new drug for immunosuppression post-transplant. There was a lot of faffing about to change the time, but eventually I got there at 2pm on Thursday and had a really interesting chat with a surgeon and a nurse. Basically the drug, Everolimus, is there to supplement/partially replace the usual immunosuppresant: Tacrolimus. The thought behind it is that initial studies have shown Everolimus to do as good a job at immunosuppression, but be much gentler on the kidneys than Tacrolimus (which can cause some kidney damage). It sounds like a win-win to me, so I've signed up for it.

Secondly I've changed my consent form for the surgery. I used to give consent to receive either a full liver or a half a liver (split-liver) from a donor, but having discussed it with my hepatologist, and having done some research I've decided that while I am keen to get the op. done, I'd rather wait for a whole liver to become available as the outcomes are better.

I'm seeing my hepatologist for my routine appointment on Monday, but I don't expect any particularly interesting news. I'm still top of my list, but as I am probably one of the healthiest people on the list (as I have no abdominal water-rentetion - ascietes, no kidney disfunction, nor signficiant brain impairment - encephalopathy) then I reckon I've probably been leap-frogged a few times by some very ill people. Apparently the hospital has been very busy with transplants recently, so unless I've been very unlucky and none of them have been medium-sized A-type livers, then I'll assume that's the reason. Still I did get a tongue-in-cheek promise from the very friendly surgeon and nurse I talked to that when they were both on-call this weekend they would keep an eye out for something for me!

Sleep-wise I'm all over the place! Last night I didn't get to sleep til 7am, then slept til 12. I slept again from 2pm to 6pm, then from 9pm to midnight. Not surprisingly I'm now as wide awake as can be. I've finally finished the entire series 1-7 of The West Wing (it was absolutely brilliant), and I've ordered something called The Wire, series 1-5 from Amazon which is apprently also brilliant so I'll get stuck in to that at some point too.

So here we are, 15 weeks on the list, and 2 weeks since the last call (the false alarm). I arbitrarily plucked the figure of 3 weeks out of thin air as the time I expected to wait for the next call so who knows - I was right with my completely arbitrary mid-January estimate for a call last time!

Positive thoughts toward the Kings liver unit please to get them to hurry up.... and thanks for reading!

I'm really not enjoying this...

Its 4:30am on the morning of Friday 23rd. My sleep pattern is completely off now. I'm falling asleep between 5 and 6 in the morning, and waking up around 2 in the afternoon. I then sometimes need an extra couple of hours of nap around 5pm and/or 9pm.

I've watched my way through 5 and a half series of the West Wing in the past 2 weeks (22 episodes @ 45 mins each per series). Most of that is at night.

I'm doing pretty much no exercise, almost nothing social, and still feel just a little bit numb after the weekend's excitement. I keep looking at my phone willing Kings College Hospital to ring, but of course they haven't yet.

Well, I tell a lie - they did ring on Monday to see how I was feeling, which was nice. The transplant coordinator on the Sunday morning had been concerned about my emotional state for the period following the disappointment, and it was nice to receive follow-up.

Apparently it was quite unusual to ask me to drive in to hospital that night, but they were really busy with other things and it helped them out. They were impressed at how fast and numerous my friends and family were to respond, which makes me feel very lucky.

So I remain top of the list effectively, in as much as there isn't anyone above me with my size of liver. How long I have to wait for the call now is anyone's guess. The old mantra (it could be tonight, it could be some weeks) has been repeated.

I just can't describe my state of mind at the moment. Positive - in as much as something finally happened at the weekend. Negative - as I'm feeling like a totally lifeless lump with nowhere to go, nothing to do, and nothing to contribute to the world while I'm waiting. I'm excited and scared, tired and frustrated. Listless.

My poor skin looks a mess. I'm scratching it so much I have small scabs all over the place where I've bled. They get scratched off and they grow and get a bit worse, and it goes on. (Sorry I know that's disgusting).

I have a small blister on my hand where I was rubbing and scratching, and it's bright yellow as the liquid filling it is, like everything else in my body, full of bilirubin.

I just must have scratched something right near a vein earlier tonight as I absolutely gushed blood for 10 minutes out of this tiny, tiny scratch. It scared the hell out of me, but luckily eventually stopped. (I don't clot quite so well at the moment - another symptom).

It's cathartic writing it. I refuse to become a negative drag on everyone else, so I don't really say it anywhere but here. I'm thinking it, but I'm also thinking, endlessly, of all the wonderful things I'm going to do when I'm well.

This may well be another of those big life battles, but damn it all, I'm going to win, and when this bastard thing is out of the way - well, watch out world!

Got the call - but it was a non-starter

I've just come back from a dramatic night at hospital. I got the call that a liver was available late last night and zoomed in, as did my family and friends. I had to wait until 8am this morning until they finally told me that unfortunately now that they had the liver back in the hospital after retrieval, it was too small for me, and it would be going to someone else.

I'm exhausted and going to bed now, but I'll post more on the subject soon!

Time flies

Well, that's good - its late on Sunday already. Time is going by quite fast, and I'm quite happy to let it do that. I'm not doing anything productive, nor really doing any work, but I'm sort of zombie-ing it out. I bought the complete series 1-7 of The West Wing on DVD which arrived on Saturday so when I'm awake at nights its been enjoyable to watch some of that.

I'm still *always* waking up at around midnight and not getting to sleep til 3 or 4 at the earliest. In fact its 11pm now and I can feel myself getting gradually more awake. I'm just giving in to it now as battling just makes me miserable.

I'm occasionally looking at work emails but it sounds like they're getting on fine without me. My energy levels are pretty low so I can't see myself achieveing much even if I went it to work at the moment, though I'll try and put in at least one appearance this week I think.

I'm going to consider a few options of excuses to call the hospital tomorrow to try and get an update. Not that it makes any difference in the end, but it would be nice to feel there's still progress going on.

I went to see my family today. I spent quite some time with my brother and nephew particularly (who tired me out no end). Little Patrick was rather cute when I was falling asleep on the sofa early in the evening and kept piling cushions on me to "keep a warm unc didi", and bringing me some of his Thomas the Tank Engine toys while I was sleepy.

Anyway, time marches on. In a melodramatic moment of feeling down during one night I started writing a crap poem about how I felt, but luckily for you I never finished it and have discarded it. It was terrible. I always get urges toward the melodramatic but frankly it does nobody any good to give in to these things!

Holding pattern

I managed to sleep for 13 hours last night, which is a record for the last few months. I still woke up at midnight, but just managed to lull myself back to sleep fairly easily this time.

Unfortunately I woke up feeling woozy, and stayed pretty washed out all day. In fact its 20 to 9 in the evening and I'm feeling exhausted again so I'm heading to bed shortly.

The only update I have had from the hospital is that last week they did 4 transplants. However the person I spoke to didn't know what blood types they were so it doesn't leave me any-the-wiser. I really didn't want to be waiting in to the new year/new term and so these weeks feel very wierd. I have a suspicion that its not going to be long now but I don't really know what to do with myself. I'm willing the days to go by, but as everyone knows the more you want time to pass the slower it appears to.

I feel very much inclined to just sit at home and do nothing and zombie my way through the remaining wait. This is a new feeling, as I've always wanted to do things and achieve things before, but somehow I just feel 'usefuled' out. It really is time for this damned operation now...

Back to work... or possibly not.

It's 4:20am on Monday morning of the first day of the new school term as I write this. Since sleeping all day last Thursday I've got locked in to a cycle of sleeping during the day and being awake all night. On Saturday I forced myself to stay awake all day anyway, but still only slept for 45 minutes before becoming wide awake at midnight and staying up til 7am. So today I just gave in and slept during the day instead as otherwise I'll make myself ill through lack of sleep.

I've just emailed in to work to let them know I won't go in today. I'm going to head to bed shortly and try and get some sleep, and then later today I'll head home to my flat and experiment to see if I can maybe sleep better in my own bed than at my Dad's. I hope not, as I've enjoyed being at Dad's, and also my flatmates are off skiing at the moment so it'll be a bit dull at home.

No news from the hospital, of course. I shall have to think of a pretext later on in the week to phone them and find out if there's been any movement. I'm sure I must be completely transparent, but then at this point who cares!

In to 2009

I'm round at my dad's house at the moment being given TLC as I've got a horrible bug of some sort. It's probably just a bad cold with a slight temperature, but I feel pretty dreadful. Given I'm not that energetic at the best of times then something like this makes me feel exhausted.

It all came on pretty suddenly - I just sneezed a few times yesterday and my nose started running during the NYE party in the evening. I rang the hospital to let them know and they said it shouldn't be a problem unless it goes to my chest and I need antibiotics of some sort. That's a relief - I don't want to be missing out on a transplant because of a cold!

Otherwise yesterday was a lovely day. I picked up my new car which is an absolute joy, and successfully got rid of my old one with the dealer none the wiser about the amount of work it needs to pass an MOT. I couldn't resist coming round to Dad's to show it to him, and then headed back home to create a costume for the "2008 events/people" fancy dress party last night. I went as the Chinese Earthquake - slightly tasteless perhaps but fun to do.

Today I've slept pretty much continuously for 15 hours until 7pm, then drove with the heating on full blast to be looked after by Dad and Carole. Having had some home-made soup and lots of hot drinks I'm sure I'll be on the mend very soon. I'm just hoping that I'll be able to sleep now having been asleep so much in the day.