Good day/Scary day

Had an awesome day yesterday. Felt very chirpy and got various bits and bobs done. Then, bit out of the blue, Sharon came round mid-afternoon and we gossiped almost non-stop for 6 hours, including a cheeky little bit of dancing in the living room until I got knackered. Was lovely to catch up, and set the world to rights.

Then today I got up feeling nearly as good, and ready to tackle a small IT task for my dad. Before I got to that though another PC decided to die vigorously and I found myself running between 3 different PC's, poking around the innards with a screwdriver and swearing a lot. This kept me so busy that by 6pm I realised I'd just done an entire day's worth of something approaching work, which was great! Unfortunately I then pulled a muscle in my weedy and skinny little back and had to take lots of painkillers and be a wimp for a bit. Still, sounds something like progress to me - couldn't have coped with today's exertions a couple of weeks ago when I was in bed all day.

Bittersweet moment coming up tomorrow morning. Last time I was in South Africa with mum she bought a Clavinova electric piano which I used to play to her while she lay sick on the sofa. When mum came back to the UK shortly after we tried getting the thing shipped over here, but it took so long that its only just arrived, 3 weeks after she died. Its going to come to me, which is great, as it'll be something to do while I'm ill, though its a shame I never got to play it to her over here...

Also tomorrow will find out if they do really have a bed for me in the hospital, or if it was just another deadline that will pass without trace. Half torn now about going in. I want the tests, and I want to get on and talk about transplants, and yet with me feeling a bit better I'm beginning to enjoy being a free man!

Bloody bureaucracy

Last time I spoke to the hospital they said "Oh we'll probably have a bed on Monday, but if not then almost certainly Tuesday". Today's story is "Well, no bed right now, and to be honest we may not have one until Thursday, but do feel free to ring us every day to find out what's happening".

Nice

So I'm still at home. Positive part is that I seem, over the last few days at least, to have stopped losing weight. Fingers crossed!

Just off to unpack my bags again. <sigh>

The big food dilemma

The biggest problem with hospital is the food. To be honest it is absolutely gross - so much so that the smell of hospital meals puts me right off eating. The last two times I was in hospital it was as a result of an emergency admission so I never really got to prepare, but this time I'm trying to be a bit more cunning. Current plan is to use the kettle in my room and a plastic pot to cook pasta for dinner sometimes, then other times ask the nurses to microwave something that's been brought in by my family to eat. Lunchtimes I'll try and get to the hospital shop for one of their less-bad sandwiches. Moral of the story? If you're thinking of visiting, bring me something nice :)

I did consider smuggling a small cooker or microwave in with me, but that might just be non-regulation! Besides if they think I'm objecting to their food too strongly they might tube me up, so sly is the word...

If this post is rambling a bit, my apologies. Had a fairly sleepless night last night after I woke up after 2 hours sleep in pain then took a hefty dose of mega-painkillers to the point that I was too wibbly to be able to sleep. Doh! Said wibbliness and lack of sleep is still affecting me a bit - I keep cocking up the easy Su Dokus. Thats my excuse anyway, and I'm sticking with it.

Just quickly, am in mourning for the loss of my favourite Strictly Come Dancing couple who went out last night. What they lacked in quality they made up for in entertainment factor, a principle I've always followed in my own dancing!!

Back in to hospital next week

So it turns out I will be back in good old Guthrie Ward from Monday. Dad and I saw the specialist on Wednesday and he was initially very reluctant to even mention the concept of transplants, but after a fair old whinge and a bit of pressure from the two of us he seemed to accept that things were really not tolerable as they are and that I fully understand the risks of transplant.

So the upshot is that as of Monday afternoon I will be re-admitted to Kings College Hospital to have another CT scan to check my liver, and then undergo pre-transplant assessment. This apparently involves talking to lots of people (nutritionsts, psychologists, surgeons, etc.) who assess me and check I understand what I'm getting myself into. Also while I'm in they're going to be monitoring my body weight. If necessary they'll try and use the dreaded nasal feeding tube to build me up (my body is not absorbing nutrients properly, particularly fats) at night as well as eating in the day. What fun.

I've ordered a Vodafone 3G data card widget that will let me check my email when I'm in hospital for approximately a million pounds per megabyte (actually not too bad, effectively no contract, card costs 150, then 80p per MB thereafter - massively cheaper than most other places i've found). So you can all email me to your hearts content, though I can't promise to check many websites/MSN messenger for sheer cost!

Just been round to the doctors to collect a repeat prescription for 4 more drugs I'm going through, including some of the dreaded disgusting nutrition drinks, though this time in some of the slightly less outrageously offensive flavours. Next job is to start finding out how to milk the system for some money to help me when my sick pay runs out (soon, very soon), and to help covering my rent and the endless prescription costs. Scroungers r us. Bring on this last weekend of freedom for a while - I might be in hospital for quite a long time.

The Blog Begins - Background

Well at least this proves I finally learnt what a blog is. As a testament to my significant boredom with this stupid illness I am going to write about myself. Here is a little background.

I discovered back in September that I have Primary Sclerosing Cholangitis, which is a rare (few cases in 100,000) liver disorder of no known cause. I've probably had it for several years but its only just become a problem - its a degenerative disease that can sit dormant or steady for years then suddenly take a turn for the worse. Nobody knows why anyone gets it, its not genetic, its not catching, its just wierd.

Its an autoimmune condition. My poor old liver is being attacked by my immune system causing all the wee little bile ducts to become all scarred and closed. This gives me jaundice, digestive problems, weight loss, fatigue, severe itching and some abdominal pain. The cure? There isn't one, apart from complete liver transplantation. Luckily that should prove to be the end of it - it rarely comes back.

I've been scanned (CT, MRI, ultrasound) and probed and poked repeatedly in and out of hospital since mid september, and suffered a couple of nasty bouts of internal infection (known as bacterial cholangitis) leaving me nearly a stone down on my normal weight (Thats 6/7 kg to the young uns), looking yellowish round the eyes, weak and feeble and suffering in the old intestines a bit ('nuff said).

My hospital I'm being treated at is the world-reknowned liver centre at Kings College Hospital by Dr. John O'Grady, one of the senior Physicians. Thanks to my dear recently departed mother I have been lucky enough to be covered by BUPA private health insurance so I have been able to stay in the rather pleasant Guthrie Ward in the hospital where I've made quite good friends with many of the nurses who have seen a lot of me recently!

The current situation is that I'm waiting to see if I will recover enough to get back to some sort of work (I've been off working at Camden School for Girls since mid-September), and therefore able to put off the risky transplant procedure. My desperate wish is also to get back to dancing which I am missing more than I ever thought possible, as is my dear partner and friend Sharon. I'm also looking forward to get back to helping the Oxford University Dancesport Team's beginners get into competition this year, along with all my friends still up at Oxford.