A blogfull of turkey

The last few days have been intense but delightful - full of family, friends and food. I don't know whether its the very rich diet I've been eating, but I've been pretty tired most days and had to have a sleep in the afternoon. Still, the rest of the time I've been spending time very enjoyably visiting people, playing with my gorgeous 9-month old nephew (officially step-nephew I guess, but that sounds ridiculous), and being social.

It wasn't without its poignant moments. On Christmas day itself I went over to Mum's old house in Northwood with my brother Charles and his wife Kathy. It only struck me when I arrived that I hadn't actually been back since she'd died - in fact the last time I left was the day before, being rushed away to Kings College Hospital while she was in a coma. Needless to say it was emotional. Hard to forget how much she'd desperately wanted to hang on until she could spend one last Christmas with us, but probably a kindness that she didn't have to suffer that long.

I allowed myself a very small glass of champagne to join in to a toast to her, when we got back home.

So now, boxing day also gone, and most of the family have upped and headed off. I've got lots of people to see over the next few days, so I think I'll probably head back to London for a while and see how I go. Even with being tired, I'm definitely now of the opinion that come January's meeting with Dr. O'Grady I should ask to be suspended from the list at least, and maybe taken off. Even though the chance of being called for transplant this early is extremely slim, its something thats at the back of my mind, as are those damned statistics.

If I stay like I am now then I'll be able to do some limited dancing and working, but generally get by for a while. Strikes me as better to do that while waiting for those cunning researchers to improve the drugs and methods in transplant technology so that I don't have to worry quite so much about being the next family casualty...

On an entirely different note I appear to have developed a penchant for blogging after midnight. Madness. Given its now nearly 1:30am I think I'll head to bed. Last night was the most blissfully successful sleep of the last 7 days, so fingers crossed for a repeat performance!

Dancetastic - an early Christmas present!

I'm somewhere in the region of cloud 9 this evening. Dancing has that effect on me. Normally this joy is portioned out a little each evening I'm in training, but having not done an proper dancing since August it hit me all in one go.

I had a one-hour dance lesson this evening at 6pm with Graham Oswick in Cheam. Sharon and I had agreed that I'd come along, probably just to watch, but if I felt up to it then I'd join in for a bit perhaps as well. In anticipation of this I planned my meal-times carefully, and had a couple of hours of sleep in the afternoon to ensure I'd be fresh. This also made up for lack of sleep last night. I left the house ridiculously early, even taking into account South London rush-hour gridlock and arrived with half an hour in hand. The studio was filled with small children having a group dance class, and parents nervously clucking over them from the sides.

I watched for a while, but mostly sat about nervously. I'd built the whole thing up a bit excessively in my head. It really felt like a test of how far my recovery had come, and a strong indication of whether dancing would ever be a serious option again in the near future. Sharon made it through the traffic from darkest Guildford with 15 minutes to spare, so we swapped Christmas presents and twiddled our thumbs. Finally the lesson got underway. I was feeling relatively energetic so I started on my feet.

Graham seemed quite impressed right from the start. Having not danced together for 4 months I don't think anyone was expecting much, but not only were we dancing as well as last August, it seemed pretty clear we were dancing significantly better. As always Graham noted some fundamental mechanical issues to look at, and we worked in some detail on some bits of simple choreography. It got pretty involved, with much banter from both sides, but it was clear we were making some pretty big improvements. I glanced up at the clock, expecting to be about 15 minutes into the lesson, but it turned out we'd been dancing fairly continuously for 45 minutes, and I really wasn't tired.

We went on and finished the lesson feeling inspired. I was absolutely thrilled, and we confirmed some more lesson-bookings in January. The feeling of release to have finally let the dancing out properly was amazing - what a drug. Grasping the bull by the horns I suggested to Sharon that we have a quiet rest for an hour then head over to Semley studio in Norbury for some practice. She really didn't take much persuading, and after a hour's sit and natter in a nearby pub we headed over to my very favourite dance-location.

It was fairly empty, but the music and the atmosphere were characteristically inspiring. We thought we'd try a little bit of our old dance routines. It felt *amazing*! Difficult to describe what was different, but the whole thing felt ten times more 'grounded' and controlled. Didn't hurt at all that all the bits we could see in the mirror looked pretty-damned fine as well. By now I was plastered with a perma-grin. Admittedly I did feel quite tired even after once-through the routine. But then again Sharon was pretty much as tired as I was - so not really an illness problem but a stamina one.

Anyway, we alternated rest/dance through the Rumbas and Cha-Chas and even managed a sneaky little Samba before deciding to call it a day and get some food. We headed off for a celebratory Chinese meal nearby to top of a wonderful evening. We were both amused, but quite pleased to feel the muscle-aches setting in even after sitting down for an hour. There's something quite masochistic about enjoying post-training pain, but you know its doing you good in the long run. Pain aside, I practically floated back to the car and back home.

Did I mention I was thrilled, delighted, excited? If I can just get this itch and sleep problem sorted the surely I must be able to get back to work eventually as well?

Itch, Sleep, Energy versus Normality

After more than a week of being out of hospital and feeling relatively well I'm getting a bit of an idea of what life will be like pre-transplant. Basically I'm slowly getting back to something normal apart from three important things.

1. The Itch. Mostly gets me at night. I was always a bit itchy, and never knew why. Turns out it was because of the PSC causing a build-up of bile-acids in the blood. According to my PSC email group, this doesn't necessarily improve as your jaundice goes, but there are some medications that I haven't tried yet.

2. The Sleep. A very mild form of encephalopathy - mild brain disfunction due to toxins. Some of this might be habit of not sleeping through the night, but mostly its the itch waking me up. Sleeping pills and herbal remedies are strictly banned as these can massively harm a weakened liver.

3. The Energy. Clearly related to sleeping, but also just a generalised feeling of weakness and tiredness that varies day to day unpredictably.

I think I can get the itching under more control with different medication. Hopefully this will help sleep and energy, but the sheer unpredictability of these two is going to be the major stumbling block to getting back to work. I'm not going to be much use if every 3rd day I call in sick due to being exhausted.

Yesterday night I managed to shock and depress my brother and his wife Kathy by going through all the survival statistics etc. of the transplant. General consensus is now that I would really do well to try and live without the transplant for as long as possible. This will let the technology improve, allow new drugs time to be used, and hopefully give more of a chance to improve the bloody awful transplant situation in this country.

Did you know that hundreds of people die in the UK every year due to lack of donors? Did you also know that last year a private members bill to make organ-donation an opt-out process instead of the current opt-in process failed due to lack of time. The reason? Too much time spent on stupid bloody fox hunting. Write to your MPs, and demand they reintroduce it. And please, please, please, sign up for organ donation (link is on the right hand side of this window near the top).

Right, nearly 4am, time to try and get back to sleep, again! Wish me luck...

Being normal!

Just back from a Christmas party. Ok, so I left incredibly early, but its the first normal social thing I have been to for over 3 months, so its quite an achievement! General comments: "Oh, you're not yellow at all really are you", and "Wow Dave, you're looking well - thin, but well!"

Not too shabby! I also sported the most gratuitous silly christmas decorations of anyone there. I always like the set the tone...

A generally successful couple of days, and nights. Slept about 9 hours the first night, and a whopping 13 last night! Catching up maybe. Maybe just recovering from my endless eating. I've got the bit between my teeth now that I seem to be gaining a little weight, so I'm usually to be found stuffing my face somewhere. It would be nice to be back to a normal sort of size by 2006 - and Christmas seems like as good a time as any to eat a lot!

I'm going to stay with my brother for a few days. We haven't really spent much time together since the funeral, so it'll be nice to catch up before the big family Christmas hits. At least Christmas isn't going to feel too unusual - even last year Mum was in South Africa. I'll miss the phonecall though. Little things...

So in general, life is mostly on the up. I think there's a chance that this current recovery could take me back to something like normal life, but at least if it doesn't I know there's a transplant at the end of the tunnel anyway. Still, it would be nice to put that off for a few years if I can get in control of the symptoms... Roll on 2006!

Shellshocked by statistics

Today has been fairly traumatic for myself and my dad and stepmum. I went to an 'education' session at the hospital today and sat there for 4 hours being told and shown more than I ever wantd to know about transplant. Having driven back to Watford this evening I then shared this with Dad and Carole, and now they're rather shell-shocked too. Its not that its anything completely disturbing, but the reality of it all really hits home.

I hope no-one minds me sharing some of the more scary facts. I think it'll be cathartic. Bear in mind these are for all liver transplant cases, and in some cases my relative good-health and age will improve them for me personally.

Pre-transplant
- Chance of patient dying while waiting for transplant: 10-15%
- Repeated endoscopies/scopes/blood samples X-rays etc. required during wating period
- At risk of brain encephalopathy due to liver failure (impaired function). It seems I was grade 1 encephalopathic a month ago when I was really unwell while in Watford. This has receded now. Symptoms include severe lethargy, jaundice, pruritis (itching), portal hypertension (a blood-flow/vein problem), bleeding from either end, severe water retention, internal infection, sleep reversal (can't sleep at night, can sleep in day), temperature control problems, bleeding/bruising problems, muscle wasting.
- 9 month average waiting time, plus/minus quite a few months

Transplant
- Will be postponed if: I am out of the country, I have a cold, I have any infection.
- Can happen any time day or night - must be contactable 24hrs a day.
- Operation takes 8-12 hours.
- Under sedation and anaesthesia for 24 hours
- Can use livers from brain-dead patients (preferred method, most success). In this case: 90% survival rate after 1 year, 70% after 5 years, 55-60% after 10 years.
- Can use livers from non-heart-beating patients (the old method). In this case 80% after 1 year, 60% after 5 years, 45-50% after 10 years.
- Can use a portion of a healthy liver. In this case 75% after one year, 55% after 5 years, 40-45% after 10 years.

Post-transplant:
- 4-5 days in Intensive care to wean off ventilation, feeding tubes. Monitoring for signs of rejection/malfunction in liver.
Following statistics for brain-stem-death transplants:
- 2% Chance of outright failure intitally
- 2-3% chance of life-threatening clot in hepatic artery (thrombosis)
- up to 10% chance of internal bile leakage into abdomen
- up to 30% chance of bile-duct structure-problems.
- High dosages of immune-system suppressants given.
- 70% of patients experience attack of acute liver-rejection in first week. Controlled by steroidal drugs. 5% chance of chronic (long-term, more serious) rejection in first few weeks.
- Immunosuppressant drugs have side effects such as: temporary diabetes, hair loss, weakness, headaches/blurred vision, muscle tremors, reduced kidney function, mood swings.
- Level of drugs starts high and reduces slowly over first few weeks until the correct level is reached to allow body to keep liver while able to fight off some infection. Immune system will always be at more risk of disease however.
- Increased risk of skin melanoma - sun-exposure to be drastically reduced.
- 2-5% chance of developing liver malignancy

The good part:
- Energy levels will be as good/better than ever before
- No major restrictions on lifestyle (aside from ensuring food cooked properly, taking medication regularly, avoiding some travel vaccines).
- Usually complete cure of problem condition

So... thats the reality. I had to deal with seeing detailed diagrams of the operation procedure, looking at samples of nasal/air/blood tubing they passed around, and lots more detail about the intensive care/post-operative bit. I also know about transplant list prioritisation and liver-donation national sharing in some detail. You can see why we're all a bit shell-shocked, but the reality is that if I'm ill enough to need it, its much better than dying from PSC! And maybe, just maybe, I'll recover enough in the meantime to be taken off the list for a few years...

Its official!

I got the phonecall this afternoon. They've decided to list me for transplant. Thank God.

I'm spending 3 hours tomorrow in the hospital for a 'education session' to explain all about the wait, operation, and living with the transplant afterwards. Still, 3 hours?! I wonder if the other people in the session are all alkies who've spoilt their own livers. Should I give them evil looks?

And the results are almost in...

After a pretty crap 3-hour-sleep night, I drove over to the hospital this morning to talk to Dr. O'Grady. A very interesting meeting, and possibly very good news. The main points were:

• Biopsy showed no cirrhosis, i.e. damage to the liver tissue itself is not as extensive as we had feared.
• The CT scan, however, confirmed the extensive cholangeopathy in the bile ducts. That is, there is a lot of damage to the bile-flow system within the liver - more so than normally seen in a PSC patient appearing as well as I do.
• As a result of this, at this afternoon's transplant multidisciplinary meeting, it is highly likely that they will recommend transplant. This will be confirmed by a phone-call later today.
• The waiting time estimate has increased to 9-12 months due to a large number of people awaiting transplant at the moment.
• I will see Dr. O'Grady again at the beginning of January

Very positive news. Shame the wait is much longer, but he completely agrees that its better to have me on the list and see how I do, rather than put the decision off.

On a completely different note, I went to Semley dance studio last night. Sharon picked me up from Watford and drove me over there, and it was absolutely fantastic. Loads of friends there, really delighted to see us (Luca, Vesa, Greg, Marcin, Clive, Tris, Indika for those of you who know!) and we had a really good time. Right at the end when everyone else had cleared the floor we even had a couple of minutes of Rumba, and boy it felt good! In fact Greg said it looked better than it ever had before, despite us having not practiced for 3 months. All that thinking (ok, obsessing) about dancing has clearly been worth something then.

Another really nice thing was being able to get into my car and drive myself about a bit. Wonderful to have the freedom. Tonight I'm being taken to the cinema by Chris, Hazel and her sister to see Narnia. Tomas is just about to pop round for a coffee and a chat, and somewhere between the two I'm going to try and get some more sleep in.

Another quick post later to confirm the transplant decision...

A tale of rampant school children, long hair, and poor sleep

I decided to make a dash in to Watford town centre yesterday afternoon to get my 'bushy' hair sorted out. I was pretty full of energy, and looking forward to getting the mop tamed. Its only about a 10 minute walk into the top of the town centre area, so I set off at a fair old trot.

After about 5 minutes I suddenly started to notice them. Kids. Lots of 'em. Huddled in little groups, kicking footballs, generally being in the way. Not that I have a phobia of kids, only you start to worry about meeting kids you used to teach. Some of them are lovely. Some of them, not to put too fine a point on it, aren't!

The real trouble is this smoke plume rising into the air a few miles in the distance. (Incidentally we can see it really clearly this morning - still not coming in our direction but bloody big!) Apparently some health wonks in Hertfordshire County Council decided the poor kiddies would be risking their delicate little lungs by being outside or travelling to school on both Monday and Tuesday, so they closed most of the schools within 10 miles of the smoke, including Watford. Madness - there's not even a smell here. Still, true to form, the kiddies all converged on Watford town centre, with nothing much better to do than take up space and feel please Christmas hols have come early.

So by the time I got to the barber shop I was practically knee-deep in the irritating little buggers (and big buggers in fact). The owner of the barber shop is very 'cool', and is something of a local celeb for all the rebel kids who get their hair-cut there in freaky ways to piss off their schools. They were hanging around outside, and inside the shop, and there was a queue of about 10 people.

Life is too short. I decided to try again Tuesday (today). Heard last night the schools would be closed again today. Arse. Am trying to go in early to avoid the rebels who I presume will lie in (sensisble assumption? no idea!)

Apart from that, things going well. Ordered most of my Christmas shopping from the internet last night, and now crossing fingers it all arrives in time. Did some useful admin and dull stuff, paying bills and the like, and, most importantly, got an appointment to see Dr. O'Grady Wednesday morning for The Results.

Still on for my dash to Streatham tonight, so Semley-folks here we come!

Other fascinating facts for the day.

- Suddenly decided my life is incomplete without the new Honda Civic coming out in January. Passed one on the way into town and thought it looked great. Oh, inheritance money, thou art in danger...
- Gingerly removed the dressing over the biopsy site, and was v. disappointed to see nothingmore than a miniscule red dot. No exciting scars to show then ... yet.
- Crap night's sleep again, as ususal, but did my usual of getting up to eat something, play some Su Doku, and try again. Seems to work every time!
- I think I'm beginning to put on weight. Hoorah! Slow but sure.

A promising weekend

I'm in recovery after an enjoyable but relatively hectic weekend. I've been pottering around the house sorting out paperwork and things, helping with making food, washing up. Its all rather normal! I also went to see the Harry Potter film yesterday evening, and went out shopping to TK Maxx today as well. Oh, and I got woken up by a massive explosion noise at 6am, despite the closed double-glazed windows, which turned out to be this huge oil depot in Hemel Hempstead which is just 4 or 5 miles from Watford. You can see the smoke plume in the distance - bizarre.

The aching from the biopsy has moved around a bit, but is generally less of a worry than yesterday, and in fact the general level of pain is pretty managable. I've made a resolution to try and stop taking the strong sub-morphine medication (Tramadol), and stick with paracetamol as I think the strong stuff made me sleep and concentrate badly. So far so good.

I'm going to tentatively plan a few more things this week. Hopefully I'll have my specialist appointment on Wednesday so Sharon is going to pick me up from Watford Tuesday night and take me down to south London to say hi to some of our dancing buddies, then deposit me in my house in Streatham overnight so I can get to the hospital easily the next morning. Hopefully I'll be up to driving my little car back home to Watford afterwards. Will be nice to be mobile.

So all looking good, subject to further notice. Oh my god, I've just realised I've failed to take any medication today at all. Getting a bit too casual about the whole thing? oops! Signing off swiftly...

Home at last!

I'm back at home with my dad in Watford. Had a pretty revolting morning with the nurse trying *4* times, painfully and mostly unsuccessfully, to take some blood from me. My veins are all pretty tender and sore anyway, so this didn't help! Apart from that the journey home was easy and I'm happily enjoying nice food and freedom back at home with the prospect of needles in sight for quite a while!

My right-side is pretty sore still after the biopsy. I can't raise my right-arm, or hold anything with any weight at any distance from my body as it strains the muscle and hurts, but apparently this will all fade over the next couple of days or so. I think I'm supposed to see Dr. O'Grady next week, if I can get an appointment, when he will tell me what conclusions he's come to. Exciting stuff, but for now I'm just focusing on recovery.

Things I won't miss:
- needles
- being woken up at 6am for "obs" (blood pressure/temperature check)
- manky food, with Sister telling me off for not "using the facilities provided"
- riduclously sweaty room
- paying outrageous amounts for internet

Things I will miss:
- magic button to press whenever I want someone
- Doctors coming in every day to see how I am and take medication decision straight away
- being in south london, in a more visitable location than Watford!

Job's a good 'un

I've finally been told I don't have to lie on my side any more. I've been stuck in the same position for a few hours to keep pressure on the tiny little hole they dug to do this liver biopsy, but it all seems fine now.

The procedure itself really wasn't bad at all. Felt a tiny bit of the local anaesthetic injections, but the biopsy itself took only a few seconds, then was all over. I have got a fairly achey pain in my right shoulder, apparently because the nerves radiate from the spine by the liver to the shoulder, or something. Anyway, nothing to write home about.

I'm still totally exhausted as I hardly slept at all again last night, so I was both tired and dopey from being drugged up with painkillers all night. Still, quite exciting to think that all the tests that could possibly be done have now been finished, and that I'm almost certainly going home tomorrow!

Mini update

Biopsy happening tomorrow morning 9am. Apparently I have to have a very light breakfast only, then in under local anaesthetic and out under observation. Therefore I should be out of hospital on Saturday and back to Watford.

Having a very bad time today with Gastritis pain. Already on maximum dose of antacid liquid and painkillers, but still not comfy. Hope it fades - don't really want to be struggling to get ready tomorrow morning due to lack of sleep.

See you on the other side, fingers crossed!

An interesting development

Dr. O'Grady just came to see me. He seemed a good deal more positive about the idea of a transplant today, and about persuading other people that it should happen. He has decided to do a biopsy of my liver to add to the evidence in favour of transplant. This is a procedure done with local anaesthetic where they basically use a mini cork borer to take a small sample out, via a small hole in the side of the abdomen. Its apparently not painful, but feels a little wierd, and there is a bit of pain for a couple of days after - not entirely unlike going to the dentist to have a tooth out.

They're going to try and book me in tomorrow, which would mean leaving hospital on Saturday. They will be able to determine if the liver has any cirrhosis (severe, irreversible damage). If it does, then the case for transplant is very strong. There are a few indications that there may be cirrhosis there, but this will confirm it. If, however, there is no cirrhosis, then the case for transplant is weaker, though I am heartened to hear that Dr. O'Grady still considers it possible.

There are apparently a few risks. 5% chance of leaking bile into the abdomen causing agonising pain, though they use ultrasound to observe the procedure to try and keep this down. 0.1% chance of severe, life-threatening internal bleeding. There is also an unspecified risk of internal infection, but they will give me a hefty dose of a strong antibiotic both before and after, and I am still on my low-level daily Ciprofloxicin in any case.

All seems fair enough, I can cope with risks of that size. If they can't book me in until Monday then I will probably leave hospital tonight and come back Monday morning. I may even stay in my very own house in Streatham Hill in the meantime.

Better news today then, what a relief! It helps that I also got a good nights sleep at last, and also that finally after endless arguments and battles, some of my inheritance money is beginning to come through.

Minor things today: Sister thinks I'm insane to buy lunch every day instead of getting it made for me for free. I rather think she hasn't tried the food... Chef still asks me once or twice a day if I want food, but never appears too optimistic. If I'm in for another couple of days I may humour him again and take a chance... maybe!

Outlook: undecided but probably disappointing

I have just finished talking with my consultant. He said that my bilirubin (jaundice-causing chemical) level seems stable, and the CT scan report apparently describes some dilation of the biliary tubing (ie some internal liver ducts blocked and not draining under slight pressure), though he is yet to examine the images himself.

My case is not, apparently, going to be discussed until tomorrow. He repeatedly told me he didn't want to anticipate the result, but then also repeatedly implied that it would come back "No transplant, sit and wait for longer/maybe try one other minor surgical option".

I'm already preparing to challenge that fairly robustly if necessary. Unfortunately I didn't really manage to do that when he saw me today as he woke me up when he came in. Due to significant pain last night they gave me a high dose of Tramadol (same family as codeine/morphine and somewhere between the two in strength), which kept me up and buzzing all night and morning unable to sleep, albeit out of pain. I finally fell asleep this afternoon, so you can imagine how alert I was after a totally sleepless night and shocked awake after about 1.5 hours sleep this afternoon!

Anyway, if he tells me they want to sit and do nothing or try minor surgery again then I shall want to check that they are therefore all very confident that I am going to have a significant improvement in quality of life. I expect him to hedge a bit at this point and say it is possible there could be some improvement. I expect to 'retaliate' with the argument that as anything below significantly better is unacceptable to me for any extended time then why not 'wait and see' if I impove while on the list instead of effectively wasting my life sitting around being ill.

What's frustrating is that this is exactly what I said to him last time, and exactly what I have told several other people today. I have been visited this morning by one of the top transplant surgeons and also the anaesthetist who both discussed it all with me, and the senior surgeon in particular said "we won't tell you to do nothing, we will offer either minor surgery or transplant".

Oh the frustration.

And Dr. O'Grady hasn't read my poem yet - "Just to let you know I have received it but not had time to read it yet as I have had more urgent things to deal with".

So still in until tomorrow, at least, expecting disappointing news. As Dad said when I told him, why is nothing clear-cut and simple with this damned disease!

Signing off for now,
disappointed Dave.

All about food and stomachs

Not a bad night's sleep last night. Not bad at all, and to top it off I had a good snooze during the morning too. After all of that I've felt fairly energetic today. That's the good part.

Unfortunately I'm all suffering a bit from the return of gastritis. Its kind of like permanent indigestion due to an excess of acid. I've been put back on two different types of medication to try and sort it out, but its a bit of a pain in the, er, stomach.

Otherwise today has been fairly straight-forward. Chef's face looked so miserable when he asked me if I wanted dinner that I relented and chose something to make him feel better. Miraculously it wasn't inedible - it did look like he'd made a special effort. Even more amazingly they'd only slightly overcooked the broccoli. Bit unfortunate that it came at the same time as another bout of gastritis, oh and also that they forgot to give me a fork. You can't have everything!

Today has also been gossip day. I've heard some great gossip about the school I used to work in, and also some great little tidbits about the world of professional latin-american dancing. Ah, connections...

Fingers firmly crossed about tomorrow's meetings and discussions. A lot rests on it...

Sleepy day

Well, all that brain work on the poem seemed to exhaust me, plus repeated sleepless nights, and I had a bit of a disappointing day today. I just could never keep my eyes open properly for more than an hour or so at a time, and I've been feeling really hot and uncomfortable. I did worry this was the onset of more fever/infection and was all set for another course of intra-venus antibiotics, but apparently my temperature is normal so it really is just my room that's hot and sweaty - phew.

The dreaded arterial blood test happened today when a doctor came in and woke me up. Like everyone else he called it the "dreaded" test, and said it could really hurt, and told me to grab his arm and squeeze hard if necessary. I doubt whether I've suddenly become well-'ard, so I'm probably just have fortunately desensitised wrists, but it didn't really hurt much at all, though I could (turn away now ye squeamish types) feel the needle going in very deep this time, and its a little bit sore after. Still, nowhere near as bad as I'd worried.

They also did an ECG on me, involving sticking on about 12 sticky pads at various points and hooking them all up to a big printer thing that spewed out a piece of paper showing various readings of my heart beat. The nurse said it looked generally ok, though the doctor would look more accurately.

So now nothing really to do until Wednesday and seeing the consultant. I emailed him my poem, a bit cheekily, so I'll be amused to hear what he says. I've already had a quite overwhelming response from other people including a lady in the USA saying she thinks they'll publish it in the PSC-disease newsletter over there. Ooh er! Well, at least my brain apparently still works anyway...

Other minor points about today. Chef looked a bit shocked when I turned down all food from him *again*. I overheard him complain to Sister that I wasn't eating, though I didn't hear her response, and she hasn't bothered me about it. Surviving well with food so far - finished off the food from Dad for lunch and got one of my favourite nurses to microwave a delicious ready-meal that Jane brought in for me. I almost feel I might have to order a meal from the kitchen here tomorrow to keep 'em from complaining, though whether I eat it or just hide it is another question.

Roll on a sleep-filled night and an energetic tomorrow, I hope...

Fruits of a sleepless night

Ok, so I slept badly again, but at least I achieved something from it...

A physician's guide to PSC

With PSC, the biliary tree

Displays Cholangeopathy

Its prognosis is fibrosis

Leading up to full cirrhosis

When this occurs one then refers

for transplant, if the team concurs

Cause unknown, the treatment shown

is UDCA on its own

Also seen: a drug regime

of daily cholestyramine

Research believes that this relieves

Pruritis that your charge perceives

Diagnose it if he shows it

with these tests that should expose it

Try CT, MRCP

to reveal his biliary tree

If this is creepy, make him sleepy

Carry out an ERCP

A stent may gain a better drain

Though some debris may still remain

In some cases patient faces

Jaundice due to cholestasis

This one sees with greatest ease

From sampling patient LFTs

A suggestion for a question

Is to check his fat digestion

An expert thinks some special drinks

Will counteract the weight-loss jinx

An odd intruige is that fatigue

Could be both small or major league

No clear connection on inspection

with nutrition or infection

Much of concern is left to learn

As more research is done in turn

But the mission for the physician

is stop the rot and seek remission

Failing that the treatment granted

Is cure the man - get him transplanted!

I think that most of the medical terms are used correctly. Tempted to show it to my consultant to try and prove what a smart-arse I am. Maybe he'll prescribe sleeping tabs to make sure I don't have any more sleepless nights and put a stop to this sort of thing!

Panic, escape, and a small dash of normality.

I had a panic last night. Total communication crisis and panic, in fact. I broke my phone - disaster! I feel a bit cut off in hospital at the best of times, but losing voice communications was particularly nasty, and I sent out an email cry-for-help. Funny how things get out of proportion late at night. After a fairly sleepless night (still can't quite shake off those abdominal pains), I realised this morning that I might just be able to get my old mobile phone as an emergency backup... It was time for an escape plan.

As I've been feeling fairly bright and perky the last few days I decided to take a bit of a gamble and try a dash home by myself to get the replacement phone. It all felt bizarrely like a bit of an adventure - I even managed to feel guilty sneaking out of the ward without telling anyone, bag on shoulder carrying my trusty supplies of Scarf for the walking bits, Su Doku magazine for the bus, and laptop for sitting at home and recovering.

Being a skinny little runt it felt damned cold out, but I valiantly brought out my trusty scarf and survived the walk to the bus stop. Quick dash to the newsagent to top up my Oyster card, deftly avoiding being run over by a bus that luckily turned out not to be mine, and back to the bus shelter, ignoring the strange wimpering snorting noises from the old woman sat next to me. I buried my face in my Su Doku and pretended to not notice her staring at me (had she noticed my prison tag? sorry, I mean hospital bracelet...?)

Anyway, bus arrived, I hid at the back, buried in the Su Doku again and ignored everyone (particularly carefully in Brixton) all the way to Streatham, and finally home, which was just a short walk away.

It was odd being at home, when the longest I've been there since September has been a couple of minutes to pop in and collect clothes/books/papers on the way into hospital the last couple of times. Still, didn't take me long to find the spare phone, plug in, breathe a huge sigh of relief, and bring out my trusty laptop to check email.

The rest didn't last long as the first email was from Dad saying he'd be coming to visit earlier than planned, so I was straight up and out again and back to hospital. Journey back was more irritating, as I missed my bus by seconds, but I proudly marched back into my room in the ward in plenty of time, noting happily that I'd temporarily missed having my blood taken due to being AWOL! (Didn't last long, they soon tracked me down, the efficient swine that they are...)

Dad and Carole arrived, bringing lots of post and lunch with them, and stayed a nice long time. We even managed a discussion about theoretical physics, though I'm not sure how thrilling that was for Carole! (I know, I am so sad)

Short interlude then Jane arrived about 4pm, bring me a delicious looking M&S ready meal (brave of her, she apparently has ready-meal-phobia) and some great reading material, and we chatted non-stop until 5:30 when Peter arrived too. We were still talking when Sharon arrived at 6:30, with Ian and Joss on the way. Pete and Jane said their goodbyes, and then Sharon and I went off to meet the other two for dinner at Nandos.

It is so nice to do normal things, in normal places. Had a fantastic meal, then Sharon and I watched dance videos and reminisced and planned to take over the world (when I'm better).

An amazing day, which didn't exhaust me, and where I managed something close to normality at times. Is this the shape of things to come? Will I get well enough to work a little bit, and dare I even hope it, dance a bit? On the other hand, If I still look like I'm better on Wednesday will they refuse me my transplant? Sigh.

Lots to think about. In the meantime I have an apparently extremely painful arterial blood sample procedure tomorrow, and a hopefully more comfortable electrocardiogram. That should round off the medical tests, leaving me to wait until Wednesday for the Big Transplant Decision.

Watch this space...

PS Doctors and Nurses all convinced I have a temperature. Firmly sticking to my guns that it is just my room is outrageously hot, and that they don't need to inject me with more drugs!

PPS My hair is getting stupidly long, for me. Pete and Jane said I looked well - bright-eyed and bushy-haired. Doh! If anyone says I look like Mark Ballas (those of you who know him), I'll cry.

Online at last

Well, thanks to Hazel I have finally got all the bits of my internet widget and I'm not proudly blogging from hospital. I arrived Thursday night after a 3-hour journey from hell through London traffic, and my brother came to meet me too which was good. He and wife Kathy are off to Florida for a well-deserved rest from the various family crises of the last few months, so it was nice to catch up.

The doctor came late on Thursday, when I arrive, and took an entire armful of blood to go and do various tests (all in the pre-transplant assessment program), then Friday morning I had a chest X-ray a CT scan on my liver and a lung-function analysis (breathing test). No results yet, they'll be delivered by my consultant. This won't happen that quickly, as my consultant popped his head round the door on Friday morning to tell me I looked a bit better and he wouldn't try and force-feed me with nasal tubes, and that he was off to Japan until Wednesday for a conference. So I'm definitely stuck in here until Wednesday at the least.

Thanks to Mai who visited me yesterday I have had two gorgeous lunches from Pret instead of the disgusting hospital offerings. I made some pasta in the style of pot-noodle for dinner. The ward chef-bloke hasn't seemed pissed off yet that I have ordered no food from him, so fingers crossed that continues - I'm very keen to keep all the staff here friendly!

Was also nice to see Robin yesterday afternoon and Hazel today. Really cheers me up to see people from "the outside", so if you're wondering whether to come, do! :o)

Only drawback so far is that my room seems to have the entire hospital plumbing and air-conditioning systems pumping away just outside which is damned noisy, and I've not slept too well, but there's always plenty of time to cat-nap during the day so I'm ok.

Incidentally, thanks to everyone writing comments on this blog, including someone I don't even know - I'm very humbled to think my writing is that interesting! Will try and keep the posting rate up. I need to keep reminding myself that this isn't as cheap as home broadband though...

I'm off!

Just a quickie. I'm heading off to hospital tonight, will be there around 9pm I think, then in for a few days. No idea how long I'll be in, but all visitors very welcome indeed as I do get bored!

Incidentally 'nother good day today - relatively large amounts of energy. Yay!

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.