The Bizarre (and Formerly Medical) World of Dave Weston, Liver Transplantee Extraordinaire

Two and a bit years

2011-04-16T12:30:00.005+01:00

It's now 2 years, 2 months, and 10 days after my liver transplant. I re-read this blog recently, and it brought back some amazing memories, both painful and triumphant.

So what is life like now? Well, first of all, the scar looks like this:

Not very visible any more! Still have a numb patch around my belly button, and I get twinges occasionally when a nerve wakes up - these are a bit painful but very welcome!

Otherwise I am still taking a whole load of pills every day:

A: Everolimus - the immunosuppresion drug. I finished the clinical trial and now continue to take 3.75mg twice a day.

B: Ursodeoxycholic acid - a natural liver acid that can help slow the course of any PSC that recurs in the new liver (touch wood, it never will).

C: Prednisolone - the corticosteroid. 5mg once a day.

D: Omeprazole - proton pump inhibtor, stops excess acid and protects my stomach against the effect of the steroid (although I still get heartburn occasionally)

E: Fish oils - purely as a health supplement, this isn't prescribed

F: Multivitamin/mineral - again, a supplement

G: Aspirin - 75mg every other day to reduce the possibility of blood clots forming around the new liver.

I visit clinic once every 6 months, although I've been going more recently until last month, due to the clinical trial. My liver function tests are now superb and comfortably in the normal range. There is no sign (as yet) of any PSC in the new liver. Fingers crossed.

Otherwise, life is amazingly good. I'm very much enjoying teaching, I've set up an education consultancy and written a piece of software to go with it. I've been appointed an honorary research associate at Brunel University, and have been advising various organisations and businesses on education and data. I've been Tweeting like a madman, and very much enjoying it.

I'm still living in North London - Kevin and I have a great flat in NW6, and we're really enjoying spending time together. He's busy setting up a fashion label.

My only brushes with hospitals recently have been nut allergies. In fact all three recent issues occurred when visiting Kevin's family in Malta. They love to put powdered almonds in cakes over there, but the manufacturers often use a lot of peanut powder flavoured with almond essence to cut costs. This has led to some nasty reactions. I will not be touching cakes in Malta again...

I've given up dancing, for the moment at least. There just wasn't enough time in the week to do it. It was sad to do so, but having got out of the dancing rat-race for a while I begin to get a bit of perspective of what a strange little fake-tan covered world it is. I do still dance around the flat when a good tune comes on though - I doubt I'll ever stop.

Life update

2010-02-28T13:36:00.002Z

Ok, too much has happened for me to keep it to myself, but I'll be brief.

I am still well. In fact, very well. I was transferred on to the new immunosuppressant, Everolimus, and it seemed to be doing just fine. I did have one week in hospital back in August when I had some minor rejection, but that was very well-managed and I was soon up and about.

I'm back at work, full time. Work is amazing now that I have the energy and I have never enjoyed it so much.

I met an amazing guy back in April 2009, in fact I mention him in my blog on that day. His name is Kevin, and he was a dancer and is now a fashion designer and is currently working with another designer on such big names as Cheryl Cole, Kylie, Britney, etc. Pop-tastic.

Anyway, to cut a long story short we started dating in May, went on holiday together with the rest of my friends in July, got engaged in November, moved in together in December, and we're planning on getting married this coming July. I have never been so happy in all my life.

I have started dancing again, with Sharon, and it's been amazingly enjoyable. We're going to compete in Pro, but we still have routines to get together. A very exciting time and Kevin is going to make her a dress (or three).

I'm starting up a new business. At the moment it's a tool that I'm going to be using at school but I'm hoping that I can develop it further in to something for all schools worldwide.

Kevin is also starting up his own fashion label, and has started renting his own studio space.

The rest of my family is doing very well - we've had one engagement and one new baby since my last update.

Life is really, really good. I thoroughly recommend a liver transplant for improved quality of life!

Until next time I'm feeling inspired to write...

All the best,

David

Happy 3 month liver birthday

2009-05-06T19:03:00.003+01:00

Three months down, and it's been an incredibly journey. My life is completely transformed. I have more energy, enthusiasm and drive than ever before. I'm back at work with avengance, and will be resuming a teaching timetable in a few weeks. I'm starting dance training this weekend, and have already been out for more nights out in London for shows, meals, bars/pubs/clubs, etc. than I had for an entire year before.

I've been following the advice of a top-notch sport-and-clinical dietician and have got back in to my gym routine, and have already seen as much difference in the past two weeks as I had in nearly two years of training before my transplant.

Of course, it's not all been plain sailing, but apart from a drug side-effect of some fairly intense acne (causing me to spend a small fortune in Boots on skin-care products) then it's just amazing. I'm back at clinic next week, where I will be on my last 4 weeks of the immunosuppresion drug Tacrolimus (aka Prograf) before I go over to the new drug (Everolimus) only.

To be honest I don't intend to make particularly frequent posts on this blog from now on unless something particularly interesting happens. I'm glad to have been able to share this incredibly experience, and I'm profoundly grateful to everyone who has been keeping up with my story.

From this time on I think the story moves away from me and on to everyone else, such as my extended family's burgeoning brood of kids, my friends' weddings, and so on. For me, the story is now changing to my career, my dancing, and the continuing twists and turns of my relationships!

Signing off, for now, with love,

Dave

Best Man

2009-04-26T17:25:00.002+01:00

This week I have:

Returned to work nearly-full time (Monday)
Worked a full day then drive to Oxford to help with practice and have dinner (Tuesday)
Worked another full day then visited Dad (Wednesday)
Worked half a day, then gone to SE London by train for Clinic (more good news, and lowered medication), and written a best-man's speech
Worked a final half day, driven to Cardiff, made two music CDs, had a big pre-wedding dinner (Friday)
Successfully got Chris married off to Hazel, delivered a successful best-man's speech, and danced for about 6 hours nearly non-stop until 1am (Saturday)
Driven back to London, unpacked, prepared to go out to see Eddie Izzard later tonight (Sunday).

Not a bad week's work really...

A positive blip

2009-04-19T10:55:00.002+01:00

I've been worried since that trip to A&E about getting a reoccurrence of the twisted intestines. I'm 90% sure it happened again this morning. I woke up and felt a sharp pain in my abdomen, but this time I knew what it was. First of all I figured that if I turned over and relaxed then it could well relax and untwist/unherniate itself naturally. A few minutes after I did then I immediately felt bubbles moving showing that whatever was blocked had cleared. It still stayed sore, and I felt it was a bit at risk of coming back, so I took two Buscopans (anti muscle-spasm medication), and a couple of painkillers, and within 20 minutes I'd fallen back asleep. I woke up again 90 minutes later feeling absolutely fine!

That really is very good indeed. The hospital had warned that reoccurrence might mean an operation next time, but it turns out that whatever the issue is, then there's a much greater probability that I can deal with it easily myself. In the grand scheme of things then the downside of that happening occasionally is just nothing compared to the absolute joy I am experiencing every day with my newfound energy, drive, and enthusiasm.

More positives - even from a negative!

Easter Holidays week 2

2009-04-18T10:24:00.002+01:00

By 'eck, I've been busy. I spent the weekend continuing the Great Clearup, and recovering from my big night out. On Sunday night I went to see 'Knowing' at the cinema, followed by a trip to a bar and proceeded to get back to my car in the car park after it had closed for the night. Monday morning I went to retreieve the aforementioned vehicle (£21 - ouch!), shredded about a tonne of old bills and statements, and went to St. Albans to take Patrick out to the park and on a train ride.

On Tuesday I finally got stuck in to filling in some forms and making some phonecalls that I'd been putting off for months. In the evening I went to the Albert Hall to watch the London Philharmonic Orchestra spectacularly accompany the film "Lord of the Rings: Fellowship of the Ring" with its original soundtrack (I got goosebumps!). On Wednesday I met with a financial advisor from NatWest who I took an immediate dislike to, and shredded more paper (not at the same time).

Thursday - ah now that was a good day. I woke up at 6:45am, bounded out of bed and got ready quickly, then jumped in to the car and headed over to Oxford. I got there just after 9am, and started helping out at an Oxford University Dancesport Team dance workshop. Absolutely brilliant fun, I was helping one of the coaches demonstrate, and occasionally taking small groups to teach them too. The day lasted 6 hours in total - 3 in the morning, break for lunch, then 3 in the afternoon. I hardly sat down once, so that counts as at least 5 hours of dancing. My feet certainly hurt afterwards, and in the following two days my back and legs have been very pleasantly sore. I'm absolutely over the moon about it - I can dance again! Can't wait to get back properly now. In the evening I met up with Sarah, my dance partner, and we had a brilliant catch up.

Yesterday (Friday), I took an enormous quantity of shredded paper, old clothes, old books, old electrical bits and bobs to Camden's Reuse&Recycling center. In the evening I took the tube to The O2 (alias the Millenium Dome) to see the controversial Russell Brand do a comedy show. He was excellent, and sent himself and the media up very amusingly, although the warmup act was pretty terrible and they wasted irritating quantities of time before and after (until I left) with getting the crowd to cheer, clap and fake-laugh so they could film us for the DVD and for some film.

Today's plan is to see Dad and Carole for lunch, back here to have a second go at pruning my clothes and books, then perhaps out tonight - maybe something salsa-related, I'm not sure yet.

Tomorrow I'm planning to take Patrick to Beaconscot Model Railway, then in the evening I'm going with a large group of friends to see La Clique at the Hippodrome, again. Did I mention that YOU MUST GO TO SEE IT? Oh yes, I think I did...

Work starts on Monday (hooray!), and I'm going in at least 4 days, probably all 5, at least for the mornings. On Thursday I'm at clinic again.

On a high

2009-04-11T10:33:00.002+01:00

I've just woken up, and I'm still buzzing from last night. With some difficulty I tracked down a couple of friends (Harriet and Jan) who weren't off seeing their families over the weekend and headed out in to Soho for a couple of drinks. There we met up with my friend Rich, his boyfriend Tim, and two other friends(one of whom was apparently one of Matthew Bourne's Swan Lake dancers), and sat around chatting for ages before heading out to Heaven nightclub which is beneath Charing Cross station.

I had such a brilliant time! Different rooms in the club played everything from 70s and 80s through to more modern music, and I danced non-stop. Harriet (who is another ex-oxford dancer) and I couldn't resist showing off a bit with some impromptu latin, and were particularly amused when we found another latin dancer having a bit of a show-off. We ended up almost putting on a bit of a show, with each of us guys taking turns with Harriet with rather cunning ways of jumping in and taking over while she never stopped!

So I really feel that if I could cope happily with that last night I can cope with anything. I met some lovely people, had a great time, and it really goes to show just what amazing progress I'm making to be able to do that just exactly 9 weeks after my transplant. In fact another confirmation of that was the clinic appointment on Thursday where I got my blood-test results from 2 weeks ago. Two more levels had come down in to the normal range (including the previously all-important bilirubin which is now below 20!!) leaving only the GGT level slightly higher (although only marginally, and it had been steadily reducing over the past 3 weeks). I'm still waiting for a reduction in my medication, but they wanted to review this week's blood tests before deciding on the new dose.

The consultant was all set to tell me to take one and a half steroid tablets per day (instead of 2) until I objected that they were 'enteric-coated' i.e. covered in sugar to prevent damage to the stomach lining, and that if cut in half this would have no effect. He laughed, and said it was a good point, and that he'd leave me on 2 tablets for now, then hopefully reduce it to one in a fortnight. You've gotta watch these guys...

All the medics and nurses were very pleased to see how well I was looking, and they confirmed that I'd gained 4kg in the past fortnight, which is an incredibly achievement for me as I've always really struggled to put any weight on in the past. I think the workouts must be helping, but the chief reason has to be haing a liver that actually plays its part in the digestive process!

This weekend I'm mostly taking it easy and gently carrying on my huge reorganisation of all my papers, clothes and books. Tonight I'm driving to Luton airport to pick up Charles and family. I think I shall also start planning another evening out for another weekend some time soon!

Back home!

2009-04-08T10:50:00.002+01:00

Life is good! I'm back home in my flat. I've been starting to sort out the mountains of paper and detritus that had accumulated while I was being too tired to sort it out before my operation. I've slept incredibly well (turns out I like sprawling accross my own double bed really rather a lot), and been enjoying shopping and cooking for myself. That said, it comes as a surprise each time I look in the fridge and realise the food hasn't been magically replenished - being pampered at Dad and Carole's was really rather luxurious!

I'm just about to head of to Barry the Shiatsu practioner, then I'm having lunch out with Dad. This afternoon I have a particularly nasty pile of paperwork to deal with, plus a little working out to do, then I'm out with my friend Elias tonight for dinner.

Tomorrow is clinic day, so hopefully more good news. Charles, Kathy and Patrick are back home from Portugal so I shall try and see them on Friday, then the weekend is still to be filled up!

Now, I'm just off to book flights to Tuscany before I jump in the car...

Manic - in the best possible way

2009-04-05T00:55:00.004+01:00

First of all, and most importantly, have a look at this and SIGN UP TODAY:

Please, sign up today, and save a life

What a week it has been. I've been far too busy to post on my blog, and I guess that is a trend that may continue so you'll have to excuse me if I'm posting only once or twice a week now. On Tuesday I went in to work in the morning and had a really efficient few hours. I got lots of projects started, and managed to grow my things-to-do list in to double figures! In the afternoon, after a very short break for lunch, I headed over to St. Albans where I took Patrick out to the park and we had a lovely time looking at trains, playing in the sand pit, and collecting pine cones, stones and twigs in his little wheelbarrow. I love my Patrick-time, and I'm pretty sure he's quite keen on Uncle-Didi time too. Tuesday night was my one and only evening in, at home with Dad and Carole. One Wednesday morning I drove over to St Albans again and helped bundle a huge quantity of suitcases in to Charles and Kathy's car, along with Patrick and friend-of-the-family Mark. I took them all up to Luton airport, though Patrick was so excited he was demanding I turn and look at every single item in the airport ("LOOK Uncle Didi LOOK, is a BIG Airpot an' a REALLY REALLY BIG windmill" - aka the radar).

They got off successfully, and I headed back home for another swift lunch before heading to Harrow for another Shiatsu session with Barry, who was delighted with my progress from the previous week. I went straight from there back to my flat where I met with my old school-friend Andy. We had a really fantastic catch-up over a superb meal from the Fine Burger Company (really worth a try if you've not been before), and I didn't get back to Watford until midnight.

Thursday morning I was up bright and early to go to work again. More efficiency, more meetings. I was loving it, and definitely looking forward to getting these next two weeks of Easter holiday out of the way, to get back nearly full-time work. Once again, a brief lunch at home, then off to Harley Street to meet with Drew Price, a nutritionist. It was my first consultation and I was very impressed indeed - he has both a clinical/medical background as well as being a top sports nutritionist (apparently he works for Chelsea football club too). Lots of useful hints and tips and he is going to send me a big information pack with recommendations next week. Quite excitingly it was my first trip by tube since the operation. I know they said to be careful of public transport but considering I've been wandering round supermarkets and my school I think its a little silly to single out trains as banned, so I'm just being careful about being in well-ventilated carriages and keeping my hands clean.

As soon as I got home from that I had all of 45 minutes before setting off to Hampton Court (a horrible journey at 6pm) where I spent a really enjoyable evening in my friend Sharon's art exhibition in the Fountain Gallery, followed by a lovely Italian meal. Again, not back until midnight!

Friday, I had my only quiet morning, then headed off to Finchley Road in the early afternoon, taking most of my belongings with me from Watford. I had a lovely afternoon pampering myself with long baths, relaxing, and doing some dancing around the flat on the lovely wooden floor, before going out to the best show I have seen in years. La Clique is a burlesque circus showing in the Hippodrome. I just can't recommend it enough. It is painfully funny, stupendously impressive, joyously entertaining, and totally unexpected. Book it NOW, you absolutely will not regret it. No, go on, I mean it - right now...

Rich, who had taken me to NoFit State Circus last Sunday has seen it 4 times now, and I can completely understand why he was so keen to take me to see it too. I can't wait to see it again either. He and I had a really good meal and chinwag at Wagamama's afterwards - a *really* wonderful evening.

Saturday morning I was woken at 8:30am by Nick and Sarah who had just flown in from South Africa. We had a good catch up over a cuppa and swapped Safari stories. Our friend Ian arrive at 10am, and we got ourselves ready and headed to Green Park station by 11am. There we met up with the remaining members of the Stag and Hen parties for Chris and Hazel's wedding, although chief Hen Laura was sadly in A&E with a trapped nerve in her neck. Fortunately the challenges and games went ahead anyway with what props I brought with and the girls went to buy on the spot. After an hour of running around, pouring beer over each other, blindfold sniffing, accosting strangers to tell stories, welsh-national-anthem singing, and other such shenanigans (which the many, many tourists in Green Park were loving) the stag and hen parties went their separate ways. I led the Stags (in my role as best man) to Gourmet Burger (again) in Soho, followed by Zebrano Bar for a cocktail-making and drinking session (where I sipped a little of each to show willing). On to my flat for poker and pizza (with two decks of Karma Sutra playing cards), and finally the tacky 'delights' of Spearmint Rhino. All the Stag-Do boxes were thoroughly ticked and a good time was had by all. I hear the Hens had a similarly good time, and fortunately Laura was soon discharged from A&E and joined in most of the day with them.

I am now finally back home, elated, and looking forward to another good week ahead. So far it is looking less busy, though frankly if this week is anything to go by I shall fill it up swiftly. I think I will spend at least half my time in Finchley Road, maybe more.

Healthwise, all is going well. The remaining stitch that was poking out and being slightly sore was finally accessibly to trim today, so I suspect the soreness will reduce hugely now that its no longer so sharp and pokey. My digestion is putting up very well with all this eating out, and I'm putting weight on at quite a rate (2 or 3 kilos in the last week, which is remarkable). I've only had about 6 paracetamol tablets in the past 5 days, and otherwise no other painkillers. I've done 2 more workouts, each longer than the last, and I'm finally managing to put a little effort in without feeling exhausted after 5 minutes. There is next-to-no yellow in my eyes at all, and every single person I meet has told me how well I'm looking (yes, I need to put a new picture up).

Life has never been better.

Circuses, stags, and someone else's medical emergency

2009-03-30T23:59:00.002+01:00

Sunday was quite the treat I hoped it would be. I was up fairly bright and early and zoomed off to Boots, Next and TK Maxx to buy some new clothes and things in celebration of my new liver. I then picked up my friends Robin and Claire from the station, had a nice lunch and a chat followed by some very naughty sticky toffee pudding with a cuppa in a nearby pub. Claire went off to the Watford Colosseum as she was doing a choral recording there, and Robin and I headed back to watch the boat race.After revelling in an excellent display of Tab-Bashing (Tab=Cambridge student, for those not in the know), Robin headed back to meet Claire, and I spruced up in my new togs and drove to Islington to meet my friend Rich.

He showed me some very natty website programming and work he's been doing (which knocks my efforts in to a cocked hat), and then we headed off to the Camden Roundhouse to watch a spectacular Circus-style show where the audience stands in the middle of the arena and various high-wire acrobatic performances go on around you, above you, among you, while you get shepherded around. Stunning, really exciting. Its called NoFit State Circus - I heartily recommend it. Rich used to do circus acrobatics himself, and his expert eye said that it was a 'good' level of expertise but he wasn't blown away. As someone without experience with these things, I thought it was incredible! I'm going to see another similar thing on Friday called La Clique, which is apparently even better, so watch this space for reviews.

Today was dramatic. I did some odd jobs and paperwork in the morning, then sat down with Dad and two of his staff for lunch. When I got up from the table to take some plates to wash up, I suddenly noticed that Dad's gardener appeared to be lying down in the middle of a flower bed. Thinking it was odd, I pointed this out to the others, who headed out only to discover that the poor man had collapsed, was slurring his speech, and seemed to be unable to move one arm. We sprang in to action, called an ambulance, got blankets and towels to get him comfortable, move cars in the drive to make room for the ambulance, rang his wife, and I jumped in to the car to pick her up to bring her to the house.

Incredibly the ambulance had already arrived as I'd started the car, and by the time I'd heaved my way through horrible traffic he'd been assessed, packed into the ambulance, and was on his way to Watford A&E. Of course, given my recent experiences I know the way there all too well, so I took the poor anxious lady straight there. Very disturbing. We heard later that they had experienced the very worst of Watford A&E when the doctor took a brief look and attempted to discharge him. The patient got up, collapsed again, and only when his daughter shouted angrily at the doctor that he should be assessing for 24hours, did the idiot cave in and found a bed available in the Stroke unit! Insanity. Apparently Watford A&E is pure pot-luck.

After those dramas I headed in to London again this evening to meet up with my very good friend (and indeed ex-girlfriend) Laura. Some years ago Laura and I were responsible for getting Chris and Hazel together, and we had a good chat about each other's plans for the Stag and the Hen do, and got some good ideas for embarrassing things to say in my speech (which Laura is backup for delivering should I have another health hiccup). Great fun to catch up, and we've got some ideas that will amuse everyone except Chris and Hazel who will hopefully blush appropriately.

Finally I got home this evening, heard all about Dad and Carole's many hours spent buying a car, and watched some West Wing (yes, I'm *still* watching it). Tomorrow I'm in school in the morning, and minding Patrick in the afternoon. Wednesday I'm seeing my amazing Shiatsu practitioner, then meeting my friend Andy in London. Thursday I'm probably at school again then going to Harley Street to have a consultation with a top nutritionist, and Friday I'm hopefully seeing this second circus-show. Then of course its the weekend and the Stag do. Life is absolutely bloody wonderful - hooray for health and energy!

The fun continues

2009-03-28T21:07:00.003Z

It's still good! Friday I went and viewed three flats as I continue my quest to find the ideal place to move to this summer. Nothing has struck me yet as perfect, most of them are still asking too much money. I think that given prices are still heading down then I might as well wait for something pretty bargain-basement or just go and rent instead.

I also got measured up and fitted for my morning suit for Chris and Hazel's wedding which is coming up in a few weeks. Very exciting. I've now finished all the things I need to do to organise Chris's stag do which is this coming Saturday.

Today I got up and about fairly quickly so that I could head in to Watford town centre to buy some rather overdue birthday presents for two of my nephews. I have been rather poor of late in Uncle duties, but hopefully given the circumstances I can get away with it this time! One of the presents involved downloading a dinosaur game from the internet, and burning it on to a CD. I absolutely sweat blood trying to create a CD label for it, and managed to scare Dad to death when I emitted a shriek of frustration and irritation when Carole's PC crashed on me. He rather mistook it for pain, though I've pointed out to him that he has been yelling blue murder in the kitchen for nothing more than dropping a knife on the floor for my entire life. Still, I shall be glad when everyone around me is able to relax and not be concerned for my health. It takes its toll, but I know there's not a lot I can do about it other than carry on getting well!

This afternoon I headed up to St. Albans and took my brother and little Patrick up to Luton to pick up their new car. As it took a long time I ended up amusing Patrick by sitting him on my lap as we drove very slowly around the car park, and he got to push the gear stick. Unfortunately when Charles came to heave him back in to his child seat in the back of the car he decided it was the time to demonstrate his new-found grip of steel on the steering wheel and complained loudly. It took two adults to prize him away, and then a fairly frantic effort of distracting him while I returned him home with Charles following close behind in the new car.

This evening I'm sitting in the kitchen at Dad and Carole's with pop music blaring out of their radio at full volume (thank goodness for detached houses). I'm on my own at the moment, and having very wistful thoughts about being out at a club on a Saturday night, so this is the best I can do to simulate that, aside, I suppose, from flicking the lights on and off very quickly. Dad and Carole will soon be returning from Croydon where they've been at baby Isaac's first birthday party.

I'm looking forward to tomorrow where the plan is currently to meet two of my friends for lunch then go and watch the boat race in a pub. In the evening I'm going down to the Camden Roundhouse with another friend and we're going to watch a quite incredible-sounding circus/acrobatic performance, where you apparently stand in the middle of the auditorium while they tumble and swing around you! I'm also already looking forward to going in to work a couple of times next week.

It's all feeling good, touch wood!

Livertastic

2009-03-26T18:10:00.003Z

Today I got a look at my blood test results from last week. Very excitingly the particularly offending test result, the AST, has plunged dramatically from a concerning 70-something down to 31 - happily in the healthy and completely normal range. Other subsidiary numbers (ALT and ALP) have reduced significantly toward normal, and the bilirubin (yellow pigment) reduced to 22. I reckon there's a chance that today's blood tests might even see that lower still, but I won't find out for a while as my next appointment isn't for 2 weeks (which is also rather nice).

It is a distinct possibility that in a few days the hospital will call me to tell me that I can reduce the amount of immunosuppresion that I am taking, which would be really good progress. Unfortunately they won't reduce the steroids just yet - but probably at the next appointment.

I do have a really good time at clinic now. Ruby, the clinical-trial nurse, is really lovely, and we have a good laugh every time I see her. It happened that my doctor this week also happened to be the main doctor on the clinical trial - his name is Hector, and he's a really great guy too. I even get on remarkably well with the phlebotomist, and manage to carry on the banter even while he's doing his vampiric best to drain my entire arm of blood! I've had to promise both Ruby and Hector faithfully that I'll send them photos of my dancing just as soon as I'm back to it!

The clinic appointment was the icing on the cake of a really brilliant 36 hours, that started, yesterday morning, when I went in to school. It was a wonderful experience. Even the act of putting on my suit was quite exciting, and it only improved when I arrived. Everyone seemed really pleased to see me, and I had waves, hugs, and handshakes all over the school. I even had a group of my former students rushing up to me asking how I was and pleading with me to come and teach them - bit of a personality clash with my replacement I suspect rather than a specific preference! I had a really useful and fruitful meeting first thing, with a colleague who has been newly appointed as an assistant head. I then attended the breaktime staff meeting (by which time I was honing my response to 'how are you?' to a pithy 3 sentences.

Rachel, the exams officer (who I share an office with) told me that I was resembling Tigger with my excess of energy, and I can entirely believe it. I think I talked at her fairly constantly for a good half hour, and I hope I haven't sabotage any exams! She said it was nice to have me back, though I suspect she'll be relieved when I stop bouncing off the walls...

I then had another really interesting meeting with another of the assistant heads and managed to cook up a whole load of jobs that need doing, and some very interesting ideas that I shall look forward to getting stuck in to before I go back in for another morning or two next week.

Finally I sat down with the head briefly who did his best to get me to take as much time off as I could possibly need as he said they had planned to not have me back until September. I did slightly poo-poo that notion, and suggested that it was rather more likely that even after the upcoming Easter holidays I would be champing at the bit to get on with things.

I thought it was probably wise to head home at lunchtime. Apart from anything else I'd failed to get out of the habit of running up and down all the flights of stairs to and from my office, so my stomach was a tiny bit sore - I really must concentrate and not do that! I went home and talked excitedly at my Dad for an hour or so, before finally putting my feet up for an hour.

Later in the afternoon my sister-in-law Kathy brought little Patrick over. I'm not quite sure where the energy came from but we were soon having a little adventure in the back -garden that involved clambering behind trees, peering through holes in fences, and a great deal of getting slightly damp with the hose and the watering can. He's really turning in to a small boy now - the baby talk is fading away and we were having lovely little chats, and he was rather solemnly following my instructions on how to water the greenhouse, albeit with more water ending up on his shoes than had been intended.

I slept very well last night, had a nice lazy morning (albeit whilst starving myself as I have to do before blood-tests in the clinic), and even managed to do a few pressups, dips, and a few exercises with some light weights that Carole has.

I'm writing this sat in my flat in Finchley Road, waiting for Sarah to come home so that we can finish off what's in the fridge before she goes to South Africa for a week's holiday. Another lovely evening ahead.

It's great being able to write such positive news, long may it continue...

Return of the dyanamic Dave

2009-03-25T06:52:00.002Z

What a great couple of days. On Monday I decided to have a lazy morning, given my energetic schedule on Sunday. Despite this I managed to accrue a list of about 12 different things to do by 11am, ranging from answering a slightly complicated email query from work, through updating my friends' wedding website and ringing various people for advice on nutrition and alternative medicine, to organising a trip to take a suitcase of gran's old photographs to an aged relative to help build up a family tree and write down some old family stories and reminiscences.

I absolutely stormed through the list, and managed to add in several more items during the day which all got ticked off. This kept me busy enough that I finally managed an afternoon without having a nap, which allowed me to get a slightly more sensible bedtime that night. I also got through the whole day with just 4 paracetamol pills on top of the required 8 immunosuppression pills, 2 cortico-steriod pills, and 2 others. An 18-pill day - can't be bad! In fact I've not had any of the powerful painkillers for over a week now.

Tuesday was even better. Another pleasantly lazy start then I sprang in to action mid-morning, and after a swift porridge breakfast (which has made a comeback as my regular morning meal - making me feel healthy and smug), I drove down to my flat in Finchley Road, picked up my post, sorted out some banking, filled in half of the application form for the distance-learning sports science course I'm studying for next year (long story - another time...), then met up with my friend Evan for a late lunch. We had a really good catch up, and bought some huge and decadent pastries from Waitrose afterwards - I was particularly surprised and amused when someone recognised him from TV and half-shouted something like "I love your work" at him as they sped by with their shopping trolley!

I managed to pleasantly lose track of time as we chatted, then had to slightly rudely kick Evan out, grab all my things together and head back to my car at full pelt to drive over to Harrow where I managed to be 15 minutes late for an appointment with Barry, an old friend-of-the-family who is a Shiatsu practitioner combined with all sorts of other massage and alternative therapies. He's previously done quite incredible things to fix any back pains and problems I've had, and I felt that given the traumas of the last 8 or so weeks that it was time for a bit of a system-overhaul.

Very pleasant indeed, and I'm sure I was at least an inch taller when I left and the slight headachey pressure in my forehead that had been around for a while in the background had almost vanished entirely. Finally it was back to Watford for a healthy dose of Chicken Soup, care of Dad, over which we managed to spend a good hour debating politics and setting the world to rights before settling down to watch a particularly mindless and yet enjoyable film on TV. (Boys' night in - Carole was staying with my step-brother Ben and his family overnight).

So, following an early night where I actually not only went to bed but also got to sleep before midnight for the first time for weeks, here I am on Wednesday morning at 7:15am about to get up and don my suit-and-tie to make my first expedition in to work since the first week in January. Very exciting stuff.

Oh, and Tuesday was a 16-pill day. All things digestive are settling slowly but surely, though I'm not entirely back to normal yet. I think that the yellow at the edge of my eyes has receded a little again, so fingers crossed for tomorrow's blood tests in clinic!

David's Odyssey

2009-03-23T00:42:00.002Z

I practically bounced out of bed at 9am this morning. Unusual, as morning's tend to be my worst time of day. Also unusual because I only finally fell asleep at 3:30am having had to sneak in a midnight snack of Rice Krispies, read far too much, and generally been overly awake due to my afternoon nap.

I quickly showered, gobbled down a generous helping of porridge, and drove over to St. Albans where I accompanied by brother and little Patrick to the woods behind their house to enjoy a stomp around, and a picnic in a makeshift 'tent' (a load of logs and sticks leaning against a tree - but Patrick didn't seem to mind). Patrick and I were both tired after that, and he went to bed for his nap, and I came back to Watford to have mine.

I woke up at around 5pm, helped Dad make a rice salad, and proceeded to pinch a generous portion before jumping in to my car and heading to Reading for a dance competition. I had been delighted and touched when three friends of mine who were already at the competition rang me having talked amongst themselves and been all concerned that I was planning to drive myself all the way there and back. Fortunately my pain levels have been continuing to diminish, my energy levels have been returning, and my intestines have been improving their behaviour every day!

The drive was sluggish, as one would expect on a Sunday evening, but I enjoyed myself immensely and played music very loudly and alternately sang loudly and then wiggled in my seat depending on whether my CD was playing pop or dancing music. I arrive, amazingly, bang on time at the leisure centre to watch the grand final of the ballroom dancing championship. There was a short break then they commenced with the amateur latin championship. I nearly exploded with excitement at seeing all the competitors, hearing the brilliant music, seeing the costumes, and smelling the fake tan. Several people told me to sit down, sit still, calm down, etc. but I was very much on cloud 9. I thoroughly enjoyed the entire evening, and got back home by just after 10:30pm.

Finally this evening I have eaten the remains of the rice salad, gabbled overenthusiastically at Dad and Carole about my evening, and finally settled down with my laptop and a good book this evening to settle down and process it all.

Things are looking up.

Touch wood.

Twice.

Day 44

2009-03-22T00:33:00.003Z

Apparently it's 44 days since the operation, 11 days since my bowel-spasm blip, and the 5th day after the resulting diarrhoea-issues. (I have been searching, fruitlessly, for a more tasteful way of referring to it - please do give me a suggestion if you have one).

I was very concerned this morning as I woke up at 7am, 8am and 9am for toilet trips, then finally caved in and woke up. 11am and midday were particularly uncomfortable. By that point I was getting quite miserable about the whole thing, and wondered whether I should even be eating lunch or dinner at all. In fact in a state of some paranoia I started researching such conditions as Crohn's disease, Ulcerative Colitis (both strongly associated with my former liver condition, PSC) and the lesser Irritable Bowel Disease. I'd begun to formulate a horrible idea that the PSC had somehow appeared in the new liver (hence the continuing dubious liver enzyme levels) and had also propagated a new symptom of bowel problems.

Anyway, putting that aside and feeling, and being slightly cheered that by 2:30pm I hadn't felt any discomfort or 'urge', I drove Carole and I to Waitrose (where I was being Dad's stand-in while he was on the recliner with a slightly dodgy back). That trip passed very pleasantly indeed, and I decided to have a little nap on our return. Dad woke me at 6:45pm and I then drove all three of us over to St. Albans for dinner with Charles and Kathy. Kathy had made an absolutely beautiful meal of spinach soufflé, stuffed lamb fillet, and tarte au citron, and we had an absolutely lovely evening.

As usual, it seems, I feel great in the evening, but seem to be much more delicate in the morning. Still, it feels like taking the whole day into account that I have made some progress, but that it may be worthwhile taking a little more care over my diet. Despite the lack of any particular scientific rigour to the idea, I feel I may go easy on the dairy produce and wheat-based foods, as I have heard anecdotally that people with IBS can experience some relief when avoiding these foods. It'll be an interesting exercise anyway, but not one that I will necessarily follow too strictly.

A particularly cheering piece of news today was texted to me by my friend Evan this morning, who had spotted an article in the Financial Times that celebrated Watford Boys Grammar to be the only British comprehensive school to have ever broken in to the list of the top 100 schools at A-Level in the history of the tables, putting it firmly at number 1 in the list of comprehensives and partial-comprehensives. I am intensely proud of this achievement, and of the whole school. Have a look at the article - its impressive how out of 9 schools making it in to the top 300, 3 are based in Watford.

I also received a lovely email from Dad's old friend Sally, who has been following my progress on this blog for some time. It never ceases to amaze me how many people seem to be taking an active interest in this, and I really want to say a huge Thank You to all of you, and tell you how much it means to me. There have certainly been some dark and difficult moments, and to know how many people out there are willing me on has been a great source of strength and encouragement.

Friday: A funeral, food, and a film

2009-03-21T01:35:00.003Z

As previously thought, I didn't make the funeral today. I'm told it was a very moving and lovely service, and that pretty much the entire rest of the family was there. I've been horribly, horribly out of touch with them all, and it is a missed opportunity. It seems that it was almost inevitable that, come 3pm, I felt that I probably could have gone after all. I guess that I was never going to have known that this morning, so it wouldn't have been sensible to chance it and risk being ill.

I guess the silver lining is that my morning at home showed me that my digestive system is finally beginning to get back to normal. I'm hardly getting those horrible repeated cramps at all now, and I've been gradually getting back to a normal diet.

It has, in fact, been a busy day. I woke up just in time to say goodbye to my brother, and Dad and Carole, and also to my step-brother Marc and his girlfriend Rhonda who also stayed last night. After a relatively relaxed morning I ended up setting off in my car at 1pm. I drove all the way to my flat in NW6 to pick up a very important box of medication that I realised I had inadvertantly left there, then after grabbing a quick sandwich headed straight back up the M1 to St. Albans to see Kathy and Patrick who were all on their tod while Charles was at the funeral.

Kathy and I had a lovely chat, then woke Patrick up from his nap, and spent the afternoon in the park, attempting to supervise our boisterous and highly energetic 2-and-a-half-year-old charge. He hasn't got a great appreciation of the joys of sharing toys and facilities in the playground, and has a tendancy to get a bit physical with those he deems to be interrupting his play, so it requires quite some attention! I also happily indulged his enthusiasm for standing by the fence to watch trains go by, up to and slightly beyond the point where Kathy was getting uncomfortable standing still (I keep forgetting that being nearly 6 months pregnant is likely to put a bit of a strain on her back...)

Later we went back to St. Albans and I read to Patrick quietly on the sofa and watched a little Thomas the Tank Engine with him while Kathy made his dinner. Finally we bathed him and Charles came back just in time to put him to bed. Immediately after this, or just as soon as the baby-sitter arrived, I headed out with Charles and Kathy to Hatfield where we indulged in a large and delicious meal from Bella Italia (so much better than you would expect from a chain restaurant), and then watched the new film Watchmen in the neighbouring cinema.

The film did start very promisingly, for the first hour, with quite a fresh take on the superhero/comic genre. Unfortunately by the second hour it lost its way, and by the time we were creeping into the 3rd hour it had descended in to meaningless and self-indulgent special-effect-laden drivel and had lost our attention completely.

Finally at 10-past-midnight I drove Charles and Kathy home, and made it back to Watford by just after 1am (hence this posting date being Saturday). I don't know why but the sheer normality of sitting through a film, being out during the evening, and driving around listening to music in my nice new car made me absolutely grin like crazy, and I am suddenly quite optimistic that I'm back on track and ready to take on the world once again.

Hopefully when I stop buzzing then I shall shortly fall asleep for a nice long time, and be ready for an even better day tomorrow (or, er, later today).

Badly-behaved intestines and a recalcitrant liver

2009-03-19T23:12:00.003Z

I've been at Kings today for my weekly clinic appointment. I've been quite anxious about it as despite having felt the diarrhoea was settled yesterday in the early hours and restarting normal eating, I had been finding that I was still needing to go to the loo once or twice an hour, although it was definitely not like the day before. That was accompanied by some cramping too. It continued through last night and interrupted my sleep a lot. I decided today to drive to my flat in Finchley Road first so that if need be I could rest and use the facilities there before continuing on. Fortunately the act of driving took my mind of it, and combined with having not had any breakfast or lunch apart from some nutrition drink, things began to settle.

The doctor today (not O'Grady this time) reassured me it was just my digestive system getting back out of the habit of having to work overtime, and that it would settle down. He noted that my Epstein-Barr virus (glanduar fever) and my Cyclo Megavirus levels had reduced significantly and he would consultant the senior surgeon on taking me off Acyclovir, which is a relief.

Of more concern was that my Liver enzyme levels (such as AST and Bilirubin) have not decreased at all in the last 2 weeks, and are still not at normal levels. They have plateued before of course, and seem to jump down suddenly, but it is disappointing that my liver is not completely settled. In fact my bilirubin has increased slightly from the low 20s to the high 20s, which I can see very slightly at the edge of my eyes (as a yellow tinge). They don't seem that concerned as these are still low levels compared to pre-transplant, but it is something they want to see resolved soon.

One possibility is to increase my immunosuppression drugs, but there are limitations about that if I stay on the drug-trial, so I have mixed feelings. I will see what they ring me to tell me over the next few days.

I returned from Kings to my flat by 5pm, had a haircut, and shopped at Waitrose for some food. I then prepared a rather nice but simple meal for my flatmate Sarah and my friend Jane who got back from work at 8pm ish, and we had a really really enjoyable evening. For the record it was a red and yellow tomato and spring onion salad with extra-virgin olive oil infused with garlic, and some ripped pieces of ciabatta bread mixed in (Gordon Ramsey idea). The main was a Japanese-style noodle vegetable broth (a la Nigella), followed by American style pancakes with lashings of Golden Syrup (Nigella again, hence the word 'lashings' - you can hear her say it can't you).

I picked up my suit from home too, as with a bit of luck I'm aiming to try and make an appearance at work one morning next week. Originally it had been for the funeral tomorrow (well, today as I'm up so late tonight), but owing to the need for regular toilet breaks I don't think I could manage either of the 2.5 hour drives so I'm reluctantly staying at home.

I'm hoping things settle down over the next couple of days so that I can go to Reading on Sunday late-afternoon/evening to watch a dance competition that lots of my friends are taking part in. It really is the dancing that is giving me the most determination to get well asap!

Watford A&E Again

2009-03-18T05:40:00.002Z

Well, as the evening went on the situation got worse. The Buscapan didn't help things at all and my lower back began to ache. I wanted to take some Immodium but Dad and Carole said I really should contact Kings, and in any case we were all concerned whether the diarrhoea would impair the absorbtion of my immunosuppressants.

The first number for Kings that I tried them on I got no response. The second number they gave me short shrift and said to phone my GP. Finally on the third attempt I got through to someone very helpful who asked me my symptoms carefuly and then went off to talk to a senior medic. He has a memorable name actually, this doctor, as he treated my instinal problems and is called Mr Bowles. Well, I think it's funny anyway...

I was told to go to Watford A&E to get an X-Ray. This was a precaution, but in light of last week's appalling saga they wanted to be on the safe side. Dad was very upset at the thought that I would be going back to Watford A&E - I think of the 3 of us (Dad, Carole and myself) he has been the most affected by those 5 horrific hours we spent there last week while I was screaming in pain.

In the end Carole took me down there, and despite a large number of people in the waiting area (the majority of whom were Irish men who had apparently been enjoying St. Patrick's day up to the point they started hitting each other), I managed to sell my story convincingly enough to the reception and got bumped straight to the top of the list and admitted immediately.

To our great relief the nurse in charge was Chris - a really nice guy who was the most reassuring and professional staff member when I was there last week. Also pleasing was the fact that none of last week's doctors appeared to be on.

Anyway, after 3 hours there, about 10 more trips to the loo, chest and abdomen x-rays and multiple blood tests, the doctor decided I could go home. She had discussed all my details with the senior medic at Kings, and they were both satisfied. They gave me some sachets of Diarolyte, but told me not to take Immodium and just 'let it run its course'. Unfortunately the extra dose of Buscopan they administered through my Cannula also did nothing to ease my now fairly intense back pain, so as soon as I got home I took the maximum quantity of painkiller tabs that I'm allowed and sat uncomfortably for about an hour with a heatpack (or back on the loo) until it finally kicked in.

By 3-3:30 am the pain was significantly eased and I'm delighted to report that the diarrhoea had finally stopped. I waited up for a little while, and then had a very small amount of bread and a nutrient drink, and now I'm finally heading to bed (5:50am!)

It wasn't fun at all, but on the plus side Watford General A&E staff were staggeringly better-performing today and have improved our confidence in them no end. Also I had it confirmed that there is no further sign of obstruction, and as a silver lining I am most definitely no longer constipated!

My food-hygiene paranoia levels are even further increased now, but justifiably so I think. Unfortunately I'm seriously doubting whether I'll be up to travelling to Malvern on Friday for my Uncle Tom's funeral, which is rather sad, but I don't think it is worth me pushing it right now. I could do with plenty of steps forward for a while.

Stomach Bug

2009-03-17T20:54:00.002Z

Just when things were starting to improve, I've just gone and picked up a stomach bug or got food poisoning. I'm suspecting some milk I had with my cereal, despite the fact that I carefully smelled it before-hand. I guess the immunosuppression means I'm more prone. The stomach cramps are both uncomfortable and slightly worrying as the last thing I want is to kick off another muscle spasm, so I've taken some Buscopan, an anti-spasmodic, which will hopefully calm things down soon.

Two steps forward, one step back...

On the up

2009-03-16T12:27:00.002Z

I've had complaints about the lack of posting. I realise that having reached a zenith of posting frequency during last week then a sudden drop to zero may come as a bit of a surprise. I'm going to blame it on relaxation and an inordinate quantity of sleep.

It has definitely taken my two days to get over last week's trauma. I've felt as though I've been one degree under all weekend, almost a little feverish during the night, and completely washed out. I was quite worried about it, but I've just followed my body's signals and slept whenever it called for it.

I read a little about how to deal with sluggish innards and have been drinking huge quantities of water, eating apples and grapes, eating small and regular meals and avoiding too much bread, cheese. It has had the desired effect, and that has been a huge relief. The pain has subsided enormously, and this morning I feel absolutely tip-top, and really ready to get on with life again. The other great thing is that with no stretched abdomen, and having no more infection the whole pain level has reduced to a wonderful new low. In fact I have completely ditched the strong opiate painkiller that I was using (also partly because it almost certainly was the cause of the constipation), and have almost used no codeine as well, relying on simple paracetamol to cope with the residual pain.

That is a huge thing in itself, and something I am very pleased about indeed. What with no Oxycontin, no codeine, no antibiotic then my regular daily pill-taking (paracetamol aside) is now down to 16!

I'm going to try driving a very short distance today - probably down to the park then I'll have a little wander around, sit on a bench and read for a little while in the sunshine. I suspect it'll be fine, but I'm only going to do a short distance for starters to be on the safe side.

I'm also busy planning my year ahead now. I'm going to start booking some dance lessons for August as some of my teachers get ridiculously booked up and if I wait until I'm actually back up and dancing then I'll end up waiting for 3 or 4 months until the lessons get started.

I'm also considering what I want to do about living arrangements, and whether I want to think about moving closer to Watford. Then I'd have to consider whether to buy or rent, though unless there was a fairly spectacular deal I don't think I'd want to buy just yet.

On the work front I've got some interesting projects to get on with - the sort of things that I'm fairly uniquely positioned to do as it ticks all my areas of expertise with data analysis, programming, presentation/communication and assessment. I do feel that I want to get back and hit the ground running. I don't think it's likely that I will be doing much, if any, maths or science teaching until the start of the next academic year, so I'll really have time to sort out some of these other projects.

Home

2009-03-13T17:58:00.002Z

Back home at last, accompanied by large extra supplies of drugs, some of which I hopefully will never have to take, but also including the trial immunosuppressant, which is very exciting!

Escape...

2009-03-13T11:00:00.001Z

In the interests of taste and decency let me summarise the situation as:
- I was a bit bunged up and uncomfortable
- remedies were provided
- problem solved.

I'm being kicked out of hospital today, and bureaucracy permitting I'll be leaving within a few hours (I'm going to organise my own taxi as they always take ages).

I've been told that over the next few weeks I need to take care to drink lots of water, only eat small meals at regular intervals, keep a reasonable amount of dietary fibre (but not too much), and no gassy foods/fizzy drinks. This is all precautionary to get my innards back to normal, but distinctly preferable to surgery!

Houston, we may have a problem (again)

2009-03-12T19:04:00.003Z

Luck. Not something I appear to be having much of at the moment.

Having started eating today and feeling fine, I started noticing early afternoon that my stomach was a little bloated. I figured that it would probably clear, and as the afternoon as gone on I've been more vigorously rubbing, moving, stretching, jumping, etc. but my abdomen just keeps getting more bloated, and rumbling away but nothing seems to be moving down below despite repeated attempts to get it to do so, and it is beginning to feel rather tight and uncomfortable, though not yet painful. This does rather suggest that maybe there is some sort of obstruction remaining after all, so I've just rather reluctantly conceded that perhaps it needs looking at and told my nurse who is informing the medics.

The chances of me leaving tomorrow are receding quickly, methinks... as for any other consequences, well, we'll just have to see.

I think I deserve a lucky break fairly soon, I really do...

EDIT: 20:45 - Doc says it probably isn't obstruction, but can't decide whether it's more likely constipation or diarrhoea from the symptoms I described so is going to 'wait and see'. Can't quite decide which i'd prefer(!)

PS Picture of me I just took, looking stubbly:

Update

2009-03-12T12:44:00.002Z

Professor Rela has just had a look at me and decided that he doesn't want to operate on me. He doesn't think it makes sense for me to undergo major surgery when I am looking so well-recovered and doing well after the transplant.

If this does unfortunately reoccur then I am to go to my local A&E and tell them to transfer me directly to Kings for surgery. I also requested, successfully, that they prescribe me a couple of Buscopan tablets to take on the way to A&E to start relieving the pain and spasm.

With a bit of luck this won't happen again, and I'll get away with it! If it does happen, I know what it is and don't have to panic that it is liver rejection, and I know what to do and what to expect.

Assuming all remains well I will be discharged from Kings tomorrow, and will head home by taxi and get on with recovery. Fingers crossed, for several reasons!

Major Surgery?

2009-03-12T12:12:00.003Z

I'm waiting for the surgical team to make a big decision. They have now analysed the CT scan from Watford General in detail and have diagnosed Monday night's problem.

When they did the original operation they had to move the intestines around quite a lot, and this meant they had to cut some of the membranes that hold the intestines in place. Now that they are free to move around, and now that there are holes in the membranes, it seems that a small loop of the intestine got caught in one of the holes.

That happened shortly after I fell asleep on Monday night, and within minutes my body sensed that there was a blockage and started pushing harder. When this didn't work the muscles began to spasm, and the pain built up. This is, I think, known as an internal strangulated hernia. This is well-known to cause extreme pain. Buscopan (an anti-spasmodic drug) gave me small temporary relief, but fortunately when they sedated me the loop of intestine relaxed and worked itself free. This is lucky as potentially it could have started to die and maybe rupture, leading, in the worst case scenario, to major internal bleeding and death. If I had been in Kings when it happened they would have operated immediately. As it is, however, I have made a full recovery and they need to weigh up the significant risks of more major abdominal surgery (with another very large cut) against the risks of the internal herniation reoccurring. It is possible that surgery could reduce the risk of further blockage due to herniation, but then replace that with increased risk of other types of blockage simply as a result of the second surgery. On the other hand it would be riskier to operate on me if I was in the middle of another herniation than it would to do it preemptively.

The final decision is to be taken by Professor Rela, the joint chief surgeon at Kings who oversaw my original surgery. It sounds like it is very much six of one and half a dozen of the other, and that the surgeons are fairly evenly divided on the issue, so I will go with whatever decision they make. If they don't do it then i would expect to be discharged very soon, perhaps tomorrow. If it goes ahead then I have to go all through the major surgical process again with all that recovery entails, setting me back a month, and keeping me in hospital for several more days at least.

I should hopefully hear later on today - more news as it comes in.

Brief update: looking up

2009-03-11T17:17:00.003Z

Feeling much better this afternoon. They've removed the catheter, my headache is gone, and they've approved me to start the clinical trial. The nurse just delivered the drugs and it will mean I get to fade out the usual Tacrolimus drug over the next 4 months in favour of the trial drug: Everolimus, which does the same thing with fewer side-effects. Brilliant!

Morphine hangover

2009-03-11T11:57:00.002Z

I've been very, very sleepy since I arrived at Kings yesterday afternoon. Last night I apparently had a slight fever, and woke up feeling very cold and shivery and had to go for an X-Ray - the hospital coridoors are freezing at 7am!

I've slept fitfully all morning, and each time I've woken up I've had a fairly nasty headache - very much like a bad hangover. I suspect its the result of all that morphine yesterday. Fortunately it has now faded to a manageable level, and it seems like my temperature has normalised too. I was also cheered up when Ruby, the clinical-trial coordinator nurse, came to tell me that I should still be able to take up the Everolimus drug-trial. That's brilliant news as I really wanted to take part, and also its a huge convenience as it means the drug company will pay for my transport to and from the hospital whenever I need to come to clinic. It's also great news as Everolimus is supposed to have significantly fewer side-effects than the normal drug.

So the plan now is that I'm allowed to sip water this afternoon. Later today if everything is fine then I can try small cups of tea or juice. Tomorrow they will allow me a little soft-food, and hopefully build up to eating normally again by Friday/Saturday. If it all goes to plan then I guess I'd be discharged at the weekend - fingers crossed.

Apparently having had one bowel-spasm due to adhesion, it is not at all unlikely that it could happen again. If it happens often then there is a surgical procedure they could try to reduce the problem, but its not something they like to do. At least if it happens again I'll know what it is, and what needs to happen. I might even get them to provide me with a just-in-case medication that I can take at the first signs of it going wrong.

Back in Kings College Hospital

2009-03-10T18:52:00.003Z

I'm back at Kings. I got taken here by ambulance (in a bed the whole time) as I've been feeling pretty weak and watery after last night's ordeal, and its hard to walk or move with a catheter in.

It sounds, fingers crossed, like the reason for the whole thing has been found, and with a bit of luck I will end up only being here a couple of days. The current theory is that after transplant surgery there can be rough scars and edges around some of the abdominal organs and tubes. What can happen is that you get temporary adhesion, i.e. two bits that could normally slide smoothly past each other get a little stuck, and this causes a twist or a fold in the intestines. The intestinal muscles respond to this with a massive push, and then go in to spasm. The tension and pain causes nearby muscles to tense completely and makes the whole thing a vicious circle.

That explains why a record-breaking 40ml of morphine did no good at all (not much use against muscle-spasm pain), whereas the weaker painkiller but strong anti-spasmodic Buscopan managed to give me almost instant relief. It also explains why giving me sedation was absolutely the right thing to do as it let my muscles relax. It would seem that my intestines untwisted themselves of their own accord, so now I'm in no pain, but just very tired and drained.

I'm pretty appalled at the Watford General A&E staff. They really were fairly clueless in the face of excruciating pain, and seemed to think that they'd rather not do anything to me to be on the safe side as I'm a post-transplant patient. What that led to was a 5-hour nightmare of epic proportions as I became 'yelling screaming patient' on the A&E ward, and my Dad became 'shouting relative' when the medics repeatedly insisted they could not do anything more, and repeatedly relented far too late and gave me something different.

Anyway, thank goodness I'm back at Kings now. They put my mind at ease straight away and seem very sure of what needs doing. I'm going to be nil-by-mouth and on IV fluids until some time tomorrow (oh dear, had to turn away a ward meal, boo hoo), and hopefully the catheter can come out then too (horrid process, wonderful end-result).

Hopefully in a few days the bruises on Dad and Carole's hands where I was squeezing them insanely hard will heal up, as will the bruises on my legs where I was digging my nails in.

What an insane day. Never again!

big setback - horrific night.

2009-03-10T14:08:00.003Z

brief update as i'm drugged up and on drips and things and typing on my phone. I was rushed in to watford general last night with excruciating pain. I was literally screaming and crying and begging for help almost non stop for 5 hours as they were so slow to give me anything that worked (i had 5 times the usual dose of morphine but it didn't help). It's calmed down now and i'm going to be transferred to kings by ambulance. They think it was probably a bowel obstruction. It may need a small operation. I hope the pain doesn't come back - that was the worst night of my life without doubt and quite possibly for dad and carole too.

Dancing day

2009-03-09T10:34:00.002Z

Yesterday was brilliant. I took a taxi, at fairly great expense, from Watford to the outskirts of Oxford to a slightly dilapidated social club where the Oxford University Dancesport Team was holding a dance competition. It's an annual event where all the former alumni are invited back to form a spur-of-the-moment 'old team' to compete against the current student team who have been practicing all year. It's only been running for the past two years, but this year's event was bigger and better than last year, and there were so many familiar faces there that it was quite an astonishing sight!

It was my first proper trip out anywhere for something non-medical since my operation, and I absolutely loved it. I caught up with so many people - there's was a bit of a constant stream of people coming up and saying "Dave, wow, you look great, how are you feeling?" I also had a *lot* of people quite anxious about me and trying to get me to stay sat down, but I was quite happy to stand up and cheer the 'old-team' (also proudly known as the sad-old-gits) and proffer my advice and observations to anyone who would listen.

I even,at one point did something resembling a Rumba, although it involved me pretty much standing almost entirely still and leading my partner around to do most of the actual moving. (I'm rather proud to say that she said it was the best leading she'd experienced all day).

I ended up leaving the house at 10am, laden with pills and potions, and got a lift back with some friends arriving back at around 6pm (I decided to forgo the pleasure of a huge and inevitably long dinner at the inaccurately named Pizza "Express" as I was getting tired). I had a grin on my face all day, and managed to lose my voice through cheering. There was some concern that this could lead to a throat infection, but given that I'm currently on an antibiotic, an antiviral and an anti-fungal then I suspect I don't have to worry too much!

I am now more determined than ever to get back to dancing fitness as soon as possible, in the best way possible. There were two dancing couples there who I used to compete against regularly until last year and they had both disturbingly improved in my absence from the dance-competition scene. I have work to do...

Looking forward to dancing

2009-03-07T23:29:00.004Z

I guess the antibiotics have been holding the infection at bay for the moment - certainly it hasn't noticably cleared up yet, but then I guess my immune system is doing its part of the job rather slowly. I'm still stooping a bit and having to keep the exercise levels lower as the infected areas are still quite sore, but in the last couple of days my energy levels have just been spectacular!

I'm so alert and motivated at the moment that I'm storming through my to-do lists. Luckily most of the to-do lists involve working on the laptop or sorting paper-based things out. When the infection clears up I'll get on to the jobs that require walking around and moving. One of the things I'm looking forward to doing is some specific exercises, like stretches and some very gentle work with light weights for my arms and shoulders. I know from experience that I can eat a really stupid quantity of food every day with little effect but the only way I really put on weight it by using weights. I have no intention of going to a gym just yet though, of course!

I'm incredibly excited this evening, as it happens, as tomorrow I'm off to Oxford (by outrageously expensive taxi) to watch the "sad old gits" dancing team (of whom I would normally be a proud member) go back to our alma mater and take up the young upstarts of the current team. It's always a great occasion and I can't wait to see everyone and watch some dancing. I'm going to probably have to strap myself to a chair though to make sure I don't even think about trying to dance. (I really won't - it would really hurt!)

My first trip out for something non-medical. And my first dancing event for months. Woo hoo!!

Clinic day

2009-03-05T20:20:00.002Z

It's been a very long day. The taxi arrived this morning at 9:55am and I had to direct the driver much of the way through London as his SatNav was giving him a very odd choice of route. I had taken some Codeine just before the journey, which was useful, and I managed to recline the seat quite a bit too, so it wasn't too uncomfortable.

I reached Kings at 11:10am after a clear journey, and bought a sandwich and sat around waiting. At 11:45 I went over to the Clinical Trials Nurse's office, only to find that she was 2 floors away in the outpatients - apparently there was a mix-up about when I was arriving (I'm sure she'd said 11:45 but she said it was 11:30). Anyway, I got my blood-tests done, then headed over to the Ultrasound department. The scan was really quite painful as they were being thorough and pressing the scanning head quite hard all over the tender bits of my wound, but fortunately it showed excellent blood flow, and no trapped fluid (which would have indicated more serious infection problems).

From there I went back to the office, and the clinical trial nurse confirmed I will come back on Tuesday, though they will ring me tomorrow if I need to adjust my immunosuppression dose to get within the accepted blood-levels to start the clinical trial.

I went up to my old ward - Todd Ward - to see if one of my old neighbours was still around. Unfortunately he was in the intensive care unit having some treatment, so I couldn't see him. However, I did meet a few of my old favourite nurses and they were really pleased to see me doing so well. I sat in the Todd waiting area and wrote a few emails. While I was there a really loud alarm went off and people started running all over the place. Within minutes someone's shocked-looking relative was being ushered in and sat down, and the nurses explained that the person he was visiting had gone in to cardiac arrest. It was amazing - like a scene from E.R. - and quite startling. I asked the guy if I could get him anything but he really didn't want to talk - he was staring in to space. Unfortunately 5 minutes later we were evicted from the waiting area by a cleaner and I had to leave, so I hope it turned out ok.

Even though it was 90 minutes before my official appointment I was really pleased that reception said they'd try and squeeze me in there and then. I got chatting to a rather sweet old American lady who was coming for her yearly checkup - she'd been transplanted in Kings in 1999 and had been doing amazingly well since. She was due to see Dr. O'Grady (my consultant who I hadn't seen since before my transplant as he'd been on holiday), and so she sat in a chair by his consulting room and I sat next to her.

Dr. O'Grady appeared at the door and did a double-take when he saw me sitting there. I overheard him mumble to the sister in charge of the clinic that he would be seeing me and to take me off the other doctors list. I couldn't help grinning. I waited for him to finish with the American lady, then he smiled at me and invited me in.

"David, I've stolen you from Dr. Block's list without asking - you don't have to see me of course, it is up to you...", he said with his fairly deadpan trademark expression, though his eyes were twinkling. I really like the guy now I've got to know him. Of course I was more than delighted to see him. I remarked that I had timed my operation and recuperation in hospital exactly to coincide with his holiday, and he noted how well I was looking. He asked me how I had got on in hospital and what the experience had been like, and I asked after his holiday (South Africa, it turned out, and we spent a few minutes enthusing to each other about safaris).

He looked genuinely delighted when I said how incredibly wonderful it was to have no itching, easy sleep, and better concentration - he really did look on the verge of slightly emotional about it which is remarkable! I asked all sorts of questions to get little details of my treatment clarified, and we talked through all my current drug regimen and the clinical trial. I'm sure that whoever was supposed to be his 2nd appointment must have been getting livid outside, but he seemed in no rush at all which was great.

He examined my wound and the infected bits and said there was really nothing to be too concerned about - a course of antibiotics (flucloxicin) would sort it out. He also said that as I was seeing the clinical trial people on Tuesday there was no need to come in again on the Thursday, and that he'd see me in a fortnight's time. Brilliant! Finally he reduced my steroid dose (prednisolone) down by a further 5mg, which is also a relief as that's probably the nastiest drug, and reassured me that my current tremor and shakiness was due to the high-dose immunosuppressant and would gradually fade as the dose came down.

I really felt so much better after talking to him, and left on a bit of a high. No blood-tests to do, so I headed straight down to book a taxi and pick up my prescription from the hospital pharmacy. Apart from a slight mix-up with taxi bookings, I was away within 15 minutes. By this time I was really quite tired, and sore, and so I reclined my seat again and let the driver get on with carving his way through the fairly revoltingly heavy traffic. It took us nearly one and three quarter hours to get back (though his speed of 55 mph on the motorway did us no favours) and I finally got back home at around 5.15pm.

So, this evening I've taken 2 of my 4 antibiotics for the day. My pill count is down one for the steroid, but up 4 for the antibiotic. He said that the 8 paracetamols could be cut as soon as I'm ready, and just use them with the codeine for breakthrough pain. So I'm up to 35 pills, with the option to cutting down to 27. Also the antiviral will be cut almost certainly next week so I'll then be down a further 5.

We're getting there. I think today is the first of the next set of steps forward...

... and one step back

2009-03-04T19:25:00.004Z

It's been a little bit of a difficult day to get through, though there have been some nice moments. When I woke up this morning all the dressings that the nurse had put on yesterday showed signs that there was infection underneath. I lay around on my bed most of the morning as my wound was a little painful, then Carole and I went to pick up the extra dressings that had been prescribed by the nurse.

I showered and cleaned the wound as best as I could and redressed it, took some painkillers, put my feet up and carried on with some work I'd been doing. During the afternoon I got a call from the clinical-trial coordinator at Kings with some slightly annoying news. Last Tuesday's blood test had shown a low residual level of immunosuppressant. In fact so low that it was below the threshold allowed for me to be eligible for the trial. Fortunately the window for me to get eligible is open until next Tuesday so tomorrow they're retesting me and hoping that the level will be better.

In brief, the idea is that they take a blood test just before I take my next set of pills, to check the lowest level that the chemical reaches in my blood. If it is too low they increase my dose so that I'm never in danger of rejection. If it's too high they can reduce my dose.

The problem is that last week's blood test was at 6:15pm. I'd normally take the pills at about 9am (12 hours after the previous dose), but because of the test I'd put this off for another 9 hours. They claim to take this extra time into account, but I'm sure it led to the low levels, so tonight I'm leaving my evening dose until midnight, so that tomorrows blood test ( at midday) will be accurate, and almost certainly will make me eligible again.

Anyway, because of the retest I won't get on to the new drug tomorrow, and I'll have to wait until a new appointment next Tuesday. Despite that I still have to go in tomorrow for the ultrasound scan, two blood tests, and a normal clinic appointment. I'm leaving by taxi at 10am, and I probably won't get home until 6-7pm. Very long day, very boring. Fortunately the company running the clinical trial will pay for the taxis!

Nicer things today included a surprise visit by a colleague at work who, in fact, also used to be my maths teacher. He has also been off work with some really complicated medical nasties (his medical history makes mine sound like a walk in the park) so we swapped hospital stories, and he told me some news about what's been happening at school.

The other thing I've enjoyed today is that I've got really stuck in to some work that one of the assistant heads asked me to do. I've spent quite a few hours researching, modelling data, phoning outside agencies and producing analyses, and it's been great! Wonderful to feel useful and do something entirely medically-unrelated. My colleague wisely said that I should ignore anyone who tries to persuade me to 'just rest' and in fact he'd been persuading people to email me jobs to do, as he knows all too well how keeping mentally busy really helps.

Anyway, this evening I'm really feeling quite creaky and sore, and its all a little miserable as I'm not really looking forward to tomorrow at all. Still, they'll finally be able to do something about this infection, and then this one step back will soon turn in to several more steps forward, and all will be well again. Onward and eventually back upward!

Strange looking dressings

2009-03-03T17:54:00.002Z

I've just come back from the GP. The wound is definitely infected, and the practice nurse swabbed it in two places and sent the samples off to the Watford General Hospital for analysis. She then put some funny little yellow gauze patches over the infected areas (antiseptic) and stuck what looks a bit like sticky-back-plastic over the top. She apparently doesn't hold with the surgeon's advice to 'leave the wound open and let it breath'. In fact she says its nonsense and only makes sense if you're lying in hospital not touching it. In real life it is bound to get dust and dirt in and so it needs covering and redressing.

The GP came and had a look and decided it probably needed treating with antibiotics. She phoned Kings to check which drugs were banned under my clinical trial. They suggested not treating the infection until they could have a look, and said that as long as I didn't have an elevated temperature or pulse rate, and as long as the wound wasn't looked hugely puffed up or angry then I should just wait until clinic on Thursday (though if I do develop any of these I need to ring them and come in to be seen in Kings). However the registrar there then wanted to check with a senior consultant so that advice may possibly change (though seeing as its now been 2 hours I doubt it).

So I've had my wounds dressed with antiseptic pads, and been patted on the head. I feel better about it, and I'm happy to wait until Thursday.

Update: The registrar from Kings called me this evening to check I was ok with the advice. She said that if I get a temperature, swelling, raised pulse, or hot-feeling around the wound then to ring her as she's on call all tonight and they'd bring me in. Otherwise it should be fine to wait until Thursday. She was going to book me an ultrasound just to check until I pointed out I already have one scheduled for the clinical trial. I still feel fine, and happy to wait. The dressings seem to be doing the job and 'drawing out the nasties'. The pain isn't really bad at all this evening.

Infection

2009-03-02T23:00:00.003Z

Well, I've been doing pretty well so far, but a very minor blip has developed today. Most of my stitches has fallen off/out except for the knots at the end, and in the junction of the "T". I may have got a little bit overenthusiastic with the encouragement to help these knots fall off too, and despite my care with the old antiseptic-wipes they have become infected.

I suspected it yesterday, but today it was for definite, and they are both a little bit disgusting and also sore and getting more painful. Unfortunately of course I have very little immune system to fight the infection off so I'm off to the GP tomorrow to almost certainly be given a hefty dose of antibiotics. The GP will have to discuss which one with the team at Kings College Hospital to ensure it doesn't interact with my immunosuppression, and also so that it does not make me ineligible for the drug trial.

The concern would be that it spreads, and I get a fever. We're definitely not anywhere near there yet, but its certainly significantly more painful today than it has been for a while even with the maximum pain medications that I have to take.

It is certainly only a blip though. Once the antibiotics kick in then it'll all clear up and I'll be back on track, but its a slight disappointment.

On the upside today I did still get out with Carole to go to do some shopping in Costco which was a nice normal thing to do. I also did some research work for my job at school - it certainly surprised some of the assistant heads when I emailed them with my report! Brilliant to be doing something constructive and useful though - I'm going to try and do more of that in the coming days and week, no question.

Sitting badly

2009-03-02T10:43:00.002Z

It's been a busy few days. Lots of visitors, and I've experimented with reducing my pain medication a little. To be honest that hasn't worked very well and I've ended up quite achey sometimes. I realise that the prime cause is when I sit on a normal chair without my back being supported properly - it means I'm using my stomach muscles constantly and when I get up afterwards it really hurts! I'm going to take care that when I'm supposed to be relaxing everything is better-supported as otherwise it means I'm not up to taking walks etc. at other times.

I managed to scare a few people by putting a slightly thoughtless 'status update' on my Facebook website. I said "Dave is really disappointed by the IVDA results from yesterday". Now most people knew that IVDA is the student-dance championships and that I was referring to my old team, Oxford, having come second to Cambridge. Unfortunately a small minority thought that IVDA was some medical term and worriedly sent messages or had to Google the term before finding out what I meant! Quite amusing with hindsight, but it shows I have to be careful.

I've been very pleased that my eyes are now very white indeed. In fact its hard to spot the yellow now unless you look right in the corner of my eyes. This is as good as, or better, than any time since I was first diagnosed with liver problems back in 2005. Carole and I have a little bet on what my blood test levels are going to be this week but we're both optimistic!

I am a little disappointed that I haven't been able to reduce my pain medication yet. I guess I suspected that I'd be down fairly significantly by this point. Still, the wound looks like its healing very well for the most part, so I'm happy to take whatever is necessary. The only thing is that the strong painkiller does have some side-effects and I think it makes me a tiny bit unsteady and shaky at times, as well as not being very healthy for my digestive system. I'll keep experimenting with lower levels occasionally so that I can bring it down bit by bit.

I've been in touch with my school this week to try and organise remote-working. I'm going to start doing a few little projects for them from home just to start getting my feet gently back under the table and feel a little useful. I'm rather looking forward to it!

Otherwise the only other things on the schedule this week are that I'm in clinic on Thursday for my clinical trial randomisation and usual checkup, and i'm hoping to somehow get to Oxford on Sunday to watch lots of the ex-members of the oxford dancesport team come out of dancing retirement and come back to take on the current members for a fun-match. Can't wait!

One less pill

2009-02-27T10:39:00.005Z

A very interesting two days since my last post.

On Wednesday I got stuck in to a few little projects that I'd been meaning to deal with for a while, and started contacting various staff members at school to see if there were things I could, in the next few weeks, start getting involved in from home. Of course everyone has been telling me to relax, but I'm keen to get the ball rolling as I know it will take some time.

I also went out for a little walk 'around the block' which turned in to a bit of an epic journey. I've just used Google Map Pedometer to calculate the distance I walked in the end and it tells me it was 1.8 miles! I was a bit tired by the end, but I'm thrilled that I could go that far without any real problem. I definitely find it very hard to go any faster than walking - I tried jogging across one road and it was quite painful.

Later that afternoon my sister-in-law Kathy and my gorgeous 2-and-a-half year old nephew Patrick came over to see me. Patrick, thank goodness has become a little more independent, but seemed delighted when I came to sit in his 'den' with him (under the dining room table) and read him books. Little bit hard on the stomach, but an absolute delight. He scared everyone else to death by playing a game jumping around the sofa right next to me - everyone else was convinced he was going to land squarely on my stomach!

I slept very well that night, although needed quite a lot of painkiller, not entirely surprisingly.

Thursday I started working on my friends Chris and Hazel's wedding website. As their best man its something I promised I'd do ages ago, but the circumstances haven't really allowed! In the afternoon Dad and I set off to Kings College Hospital to go to an outpatients appointment. It's a long drive across London, though we stopped to buy some presents for the nurses in my old ward, and pick up a few things from my flat.

The appointment was at 4pm but I had to wait for ages - it was 90 minutes late. The surgeon I talked to was very helpful, and seemed pleased with my progress. He reduced my daily steroid dosage (hooray, now down from 33 pills a day to 32!) and said we'd look at the immunosuppression dosage when I start on the clinical trial next week. After this appointment I waited 45 minutes for a blood test. Finally we finally headed off home, via a bagel-bakery and a deli-restaurant for a truly delicious salt-beef meal (which I ate record-breaking quantities of).

Once again, a great night's sleep. I now have a blissful week to go before my next hospital visit, and plenty of lovely things to do. I'm getting comfortable with my 7-times-a-day drug-schedule, and the 32 pills I have to remember, plus the 3 nutrition-drinks and the 4 oral-rinses I have every day. Still - it will be nice when it all starts cutting back. I'm particularly looking forward to the pain reducing, though I guess I'm putting more strain on with all the extra exercise.

Seeing the whites of the eyes

2009-02-25T08:17:00.002Z

I've just woken up from my second amazing night's sleep in a row. In fact this was better even than the night before as I didn't wake up too hot in the night. I've been sleeping a good 9-10 hours each night, uninterrupted by nurses, shouting, beeping, etc.
Hopefully soon I'll get back in to the habit of not waking up 3 times a night to go to the loo as well, though frankly I'm just pleased that my kidneys are working really well - I'll let them enjoy their newfound freedom for a while.

My old GP came round to visit me yesterday and prescribed large backup quantities of the medicines I'm on. The pharmacist looked rather startled to see the enormous list of things. Dad and I will *definitely* be taking the car to pick up the crate of things today. Both she and also my best friend Chris's parents who came round were rather surprised to see me open the door. I rather suspect Dad and Carole are rather proud of that too as they seem to be conspiciously far from the front door each time it rings...

Yesterday was remarkably tiring, but then I think I spent about 5 times as long as usual up on my feet. It serves to show how bored I was in hospital without anywhere to go, whereas at home I'm always up and about doing things. Still, I'm managing my pain very well even without the injections available. I'm glad they didn't reduce my painkiller level in the hospital before I went - I definitely need it still to counter all this extra movement. But it will all be great for my recovery.

I've been going around since I left hospital grinning like a fool. Little things like being able to look into my old bedroom mirror and see white eyes staring back at me instead of yellow, Carole noticing that I'm not scratching all the time while watching TV, feeling tired in the evening and falling pleasantly asleep with ease - these are all so amazingly satisfying I just can't express it!

I've been in touch with work about doing some little tasks on my computer while at Dad's - accessing the school computers remotely. They all keep saying "don't worry, don't overdo it", though fortunately the Head has realised it is futile to try and stop me getting involved as he knows what a determined enthusiast I am.

So a relaxed day coming up today, with my sister-in-law Kathy visiting this afternoon with my gorgeous 2-and-a-half year old nephew. Tomorrow is more exciting - she is having a 26-week pregnancy scan to find out the sex of new baby Weston. Also I'm off to the hospital for my first weekly checkup in the clinic, and to meet the chief surgeon from my operation to discuss progress.

Home at last

2009-02-23T18:48:00.002Z

Oh, finally! I'm sat on the sofa at Dad and Carole's in Watford. I am stuffed with chicken soup, and I've got my feet up watching an episode of The West Wing on TV.

It's a wonderful feeling, if slightly surreal. I've just written out an enormous chart that i've laminated and stuck up on the wall that I can use to tick off my medications each day. I've split it in to 7 separate times of the day, with various combinations at each time. I'm going to use a whiteboard marker and wipe it clean each day.

That's a lot of drugs...

I was so jumpy this morning after I got the news that I could go home, and excited. I practically skipped around the ward (not a good look). It did take a while to organise transport, but I had enough time to pack up my things, and went to my neighbour next-door on the super-urgent liver transplant list to wish him good luck. I've got his mobile number and email address and I'm going to keep in touch and see how he does.

The journey home was actually very straightforward. The hospital eventually organised a taxi to my flat, and I arrived about a minute before Carole arrived on the train from Watford. I picked up a few more clothes, then Carole drove me back to Watford in my car. Dad has a slight cold, and in a state of wonderful caution has taken to wearing a surgical mask if we're in the same room.

But wow, it is so nice to be home. I may well blog slightly less regularly while I'm here, but I'll definitely keep it up for the moment. Thanks everyone for your wonderful messages of support and concern during the difficult days of hospital - it has really meant a lot to me.

Day 18 - Miraculous recovery - going home!!

2009-02-23T11:24:00.002Z

Wonderful news!

My blood test results improved hugely over the weekend, and they have cancelled the biopsy, and are letting me go home this afternoon. The hospital are organising transport for me to go back to my flat. Carole is coming down by train and meeting me there and she will drive me back to Watford in my car.

I am thrilled and delighted, and relieved!

Next news will be coming from Watford!

Day 18 - Biopsy

2009-02-23T06:45:00.003Z

(No more poetry today...)

I've just been woken up by the doctor at 6am to take blood tests. She said it is very likely I will have the liver biopsy procedure carried out today, but doesn't know when (click on the previous link for more information on it). It's not very comfortable but not a big deal compared to what I've been through! Apparently they can use it to rule rejection in or out definitively. I don't know what the course of action would be if it isn't rejection, but if it is rejection then it will mean an extra several days in hospital and a big boost of steroids and immunosuppressants to control it and then let things settle back down.

More details as they come, but assuming I get the procedure they have to keep me overnight for observation anyway, so earliest discharge tomorrow, but likely to be here a while longer yet.

Last night 4 of my friends took me out to Nandos again (dining out options in camberwell are notably limited...), and I ate even more than last time. Yesterday in the morning I also walked right to the far end of camberwell to get a haircut. I got a bit of a scalping, as is the trend around here, despite asking for something distinctly more conservative:

Scalped! - taken 6:50am Monday 23rd Feb in my hospital room.

Still, it's great to know I can walk quite far now without difficulty - my fitness is improving every day. My nurse this morning tells me I have the most stable 'obs' (blood pressure, pulse rate, temperature, blood-sugar) of anyone on the ward.

Boredom leads to poetry - sorry...

2009-02-22T10:31:00.002Z

I'm definitely getting bored, I just started writing poetry. Go back 3 and a bit years in this blog and the point where I was *really* bored was the point where the poetry started.

Well here it is, with apologies:

Hospital Verse

It's a terrible curse
to be seen by a nurse
who is sullen and cold
and exceedingly terse.

When you try to converse
they are clearly averse,
and nothing is gained
from attempts to coerce.

But I guess it's perverse
that to have the reverse -
a nurse who is ceaseless -
could well be far worse.

On the whole I'm averse
if they can't intersperse
a few words, though I'd soon
not hear chapter and verse.

So if you learn nursing
My tip for conversing?
Practice makes perfect,
but no over-rehearsing!

Night 16

2009-02-22T03:46:00.007Z

3:45am.

Just been woken up by Loudmouth Linda's evil sidekick: Warbling Wendy.

Since yesterday I've noticed that the great Double L has fallen silent. Now, perhaps she finally did get that help she was after, perhaps she lost her voice, or maybe she's been surreptitiously removed. Either way, her mysterious protégé has apparently now risen to the task of her replacement. Wendy (not her real name, I'm just too lazy to find out) has a more limited approach to sound-pollution. Averaging a strict yell-a-minute when in full-voice she has a thin reedy voice with an operatic vibrato. 9 times out of 10 she goes for the classic "Help!" but if you're lucky she'll throw in a "Please Someone Help Me" to break up the monotony.

She's a game player though, this Wendy, and she'll occasionally save up some "Help's" then let them all go in a great wave of shouting. Cunning.

(Author's note: for the first time ever she has just shouted "Harry!", just to spoil my writing I am sure. Damn it, now she's "Sorry Harry!" - I'm going to ignore this new ploy... no wait... phew, we're back to "Help").

And now that I've got that off my chest...

The ultrasound scan was very positive - they said it was all very good condition from what they could see. So now I'm really just waiting for *some* movement in the right direction of my LFTs (blood test numbers) by Monday, or else it's the dreaded biopsy for me.

I had a brilliant evening, with my friend Elias coming round. We snuck out and went down the road to the night-hotspot that is Camberwell and had a really nice Chinese meal. My appetite is returning but not quite there - I only managed 2 crispy duck pancakes and a couple of small bowls of rice with sweet-sour king prawns and chicken in black-bean sauce. But nevertheless, mmmmm!

Wendy's still at it, so I won't sleep for a while yet, but maybe on a Sunday I'll be allowed the odd half-hour lie-in? You can only hope...

Day 16 - More disappointment

2009-02-21T14:40:00.002Z

I'm being kept in, again. My temperature has been perfectly fine for the past 24 hours so I think they have ruled out the possibility that there is a problem with that. Unfortunately my AST blood level is still remaining stubbornly high, so the medics had a meeting and decided they want me to remain in until at least Monday. If it hasn't come down over the weekend then they will have to do a liver biopsy. That essentially involves sedating me a little, putting lots of local anaesthetic in one side of my abdomen, and inserting what amounts to a very thin apple-corer into my side into the liver to remove a small sample.

In between the last paragraph and this I've just had some explanation (this is all very up-to-date!). I'm being sent for an ultrasound scan which will look at the flow of blood around my liver. They want to examine the 'patency' of my blood vessels in the liver (the extent to which they are open and free-flowing). If there are issues with that (which there have not been in previous ultrasounds), or if the AST-levels remain the same (not dangerously high but just stubbornly not normalising), then a liver biopsy will enable them to have a look at the vessel structure under the microscope.

There is a possibility that the reason things are not normalising is that I am experiencing very mild rejection of my new liver, and would therefore have to increase my steroid and immunosuppression dosage for the time being.

Further updates after the scan. This is all slightly concerning, but the doctors don't seem to be worried that it is a major problem at the moment, just something that will need attending to before I go home. Shame really, as I'm well enough now that hospital is beginning to get very boring indeed!

Day 15 - Feeling better about it all

2009-02-20T19:53:00.002Z

Well, I've cheered up no end now. At 3pm my temperature was a perfectly healthy 37.0, and I haven't felt like I'm getting ill at all. To be honest my theory is that my body is being a little inadequate about regulating its own temperature. For example last night I was sat in a very hot room before they measured my temperature at 37.7, and it returned to normal this morning when I woke up in a nice cool room. After my hot shower it went back to 37.5, then after a relaxing afternoon in my room with the window open and a fresh breeze it was back to 37.0.

Ok, so it should be doing a better job at maintaining something healthy, but I don't believe it's indicative of infection. I'm hoping to get a clean bill of health tomorrow morning, but if the test results have not come back yet then I wouldn't be at all surprised if they say stay until Monday.

Dad came over at 4 today to cheer me up, although to be honest I'd already taken it on the chin and cheered myself up. We had a lovely chat, and then snuck out of the hospital to walk all the way down the road to Nandos chicken restaurant where I had an absolutely delicious meal. I now feel happily full, and it was lovely to have escaped for a bit (however naughty that may have been!)

They've started me on another drug - acyclovir. It's an antiviral treatment to deal with the raised level of EBV virus. I'm taking that 5 times a day for about a week probably, just to add to the mix of different substances!

Fingers crossed then for tomorrow.

LEAVING CANCELLED!

2009-02-20T10:30:00.004Z

30 minutes from my agreed pickup time I've just had the doctors tell me they want me to stay for 24hours more, and maybe beyond that.
Last night I had a temperature of 37.6. It was normal this morning (36.8), but just now it was 37.5. My protestations that I have just had a hot shower were ignored. Apparently my EBV virus level (glandular fever to you and me) has risen just slightly. Almost everyone carries it in their body dormant. By itself that wouldn't be enough to keep me in, but with the marginal temperature that's it.

I've taken lots of deep breaths, dried my eyes a bit and tried to not be too argumentative, but I am deeply disappointed, of course. So near, and yet, so far.

Day 15 - Leaving day & Multiplying Moaners

2009-02-20T08:58:00.002Z

Well, finally! I've just finished my last breakfast-in-bed (the only real upside of hospital), and I'm just waiting for the new linen to arrive on the ward so I can get a new towel to shower and get ready to go.

I didn't sleep very well last night. It was very noisy on the ward. Loudmouth Linda spent the entire night crying and weeping, and was keeping me awake even though my door was closed and so, I believe, was hers. This morning she has been joined by another voice who warbles (like an aging opera singer) "Help!" at almost exactly 30-second intervals. Linda herself, clearly quite tired, has ceased to make any distinct words, and is now making sort of animal whining noises.

I've got to see the pharmacist this morning to get my 2-weeks supply of drugs to go home with. In addition to yesterday's list I'll *also* be on Cocodamol (painkiller: paracetamol/codeine mix), and Aspirin (as an anti-clotting agent). I also have to see the clinical trial team for an examination to ensure I'm still on course for the trial. They're really quite excited about me as I'm progressing toward being the first patient in the whole of the UK on this trial (although there are many already on it in the USA). I also have to meet with the nutritionist to discuss what food and supplements I should be having at home. I'm pretty confident I already know about this but it does no harm to hear it again.

I'm going to miss some of the wonderful nurses here. They are some of the most wonderful, understanding, sympathetic, compassionate people I have ever met. I was thinking of getting them a box of chocolates but that seems a bit too easy and not enough. I'm going to give it some thought and get something more meaningful.

I'm *not* going to miss being woken up at 6:30am each morning with medication and observations (blood pressure, temperature, etc.). I definitely won't miss the several injections per day, nor the finger-pricks they do to test blood-sugar a few times per day.

I absolutely definitely will not miss the food. Dad has tantalised my tastebuds with the thought of chicken soup tonight. Wonderful!

Roll on the journey home.

Day 14 - Homeward bound tomorrow!

2009-02-19T12:20:00.002Z

At last, the doctors have confirmed that I can go home tomorrow. They showed me the various blood test levels which have indeed been fluctuating, but have been settling down markedly in the last couple of days. In particular they are pleased that my INR (a measure of the blood's ability to clot) has returned to normal.

So I will be taken back to my flat in Finchley tomorrow morning by ambulance where I will pick up a few fresh clothes and then get collected by Dad or Carole to take me to Watford for a little while. I have a couple of meetings in the hospital before that, one of these is about nutrition and the other is about the clinical trial, but that's all, and they should be finished fairly promptly.

A very mildly disappointing piece of news is that the doctors think I will probably needs to remain on a low level of steroids for the rest of my life, as well as the immunosuppression. They said this is fairly routine for people who used to have PSC, but it is a shame nevertheless. I'm going to do some research in to this and find out more about it, as if it is avoidable I would certainly like to.

So I will be going home with the following drugs:

Tacrolimus - the main immunosuppressant drug to prevent rejection. In a few weeks due to the clinical trial this may be mixed with/replaced by a newer drug called Everolimus.

Prednisolone - a strong steroid, also used to prevent rejection.

Nystatin - an antifungal to be used while I my immune system is being strongly suppressed.

Omeprazole - effectively a strong antacid and method of buffering my stomach against some of the nasty effects of the steroid.

Oxycontin - a strong opiate painkiller

Paracetamol - an additional background painkiller

The levels of all these drugs will be reduced gradually over the next 3-6 months. Eventually I will be only on much lower doses of the immunosuppressant and the steroid.

The main drawbacks to these drugs are that I will always be more at risk of catching bacteria, viruses and fungal illnesses (particularly in the first few months). I am also at a very significantly increased lifetime risk of skin cancer, and to a lesser extent other cancers.

However, sensible precautions and a healthy lifestyle should help counter this. Don't be surprised if I seem to have turned in to a bit of a healthy lifestyle obsessive - I'm having to work against a raised risk of cancer that is nearly equivalent to smoking!

My exercise regime seems to be working well. I have been making sure I get a shorter walk at least once an hour, and I'm doing more gentle stretching. In combination with slightly higher levels of painkiller I can already feel things ease ever so slightly.

Right, lunchtime calls. More food intake is another priority!

Day 13

2009-02-18T20:04:00.003Z

I'm lying on my bed with a rather sore stomach at the moment. After some discussion with the Physio today I decided that what I needed to do was to increase my level of painkillers and then just try and do more gentle stretching and more short bursts of exercise instead of prolonged walks. As a result of that, however, my stomach feels rather painful, and that's even after all the extra painkiller injections...

Still, it's a new target for me now - to do a small piece of exercise every hour. I managed that pretty well this afternoon while my Dad and Carole were here. We had a great afternoon and discussed all sorts of plans for the future.

I also heard from the doctor that they have yet to make a definite call on my leaving at the end of this week. Apparently on the day of surgery a small liver biopsy did raise some mild concerns about the state of the organ, which is why they did so many scans and tests over the following days. My liver function blood-tests are getting back to normal levels slowly, but are still fluctuating, so taking in to account their initial concern they are being very cautious.

If they're not happy then they will keep me in and give me a liver biopsy on Friday or Monday. I'm not sure what would happen at that point, but I'm not going to get in to to detail unless the situation actually arises. Fingers crossed it's all fine.

I crossed off one of my important to-do tasks this morning, by writing the letter to my liver donor's family. I don't know any details about my donor, though I am allowed to find out age and sex. To be honest I'm unsure if I want to know anything just yet, as I don't really want to have a feeling that I'm going round with an alien lump of flesh inside me. As it stands it just feels completely like part of me, and maybe I'll keep it that way and find out nothing more. I can put off the decision for now - maybe I'll want to know in a few weeks.

It was a very hard letter to write as I don't know the people, or their relation to the donor. It was quite an emotional thing telling the story of my disease, and my mum's death, and how I've been doing for the last few years. When the transplant coordinator, and later Dad and Carole, had a read through it seemed to bring a tear to their eyes.

I'm going to hold on to it for a bit and re-read it in a few days when I'm out of hospital, but it's something I want to do sooner rather than later.

That's all from me for now - it's time for a short walk around the ward again. Tomorrow I might write a bit about some of the drugs I'm going to have to take for the next months and years.

Day 13 - Loudmouth Linda

2009-02-18T09:12:00.002Z

What a delight this ward has become. Somewhere down the hall is a lady called Linda, apparently. Linda has brought a new and 'exciting' atmosphere to the ward with her constant yelling of "OH GOD PLEASE HELP ME, OH GOD, NOOOOO, PLEASE, SOMEBODY HELP ME, OH GOD, PLEASE PLEASE PLEASE" followed by a loud retching noise, then a long wailing cry with sobs, then start again from the beginning.

I'm afraid I don't have any sympathy as she is refusing to take any painkillers, refusing to talk to the nurses, and just shouting them down with more yelling. The nurses are clearly at their wits end. If my eavesdropping skills have not deserted me she also has a family who come in every so often, shout at and abuse the nurses then leave again.

What fun.

Anyway, apart from that I'm feeling pretty good. Just had a larger-than-normal breakfast after a decent night's sleep (apart from the occasional waking by Linda). I'm now self-medicating though there was some argument last night over whether the medication schedule I had been given accurately reflected the doctor's prescription. That'll be resolved this morning with a bit of luck.

More later...

Olympic record post PSC-transplant!

2009-02-17T20:01:00.004Z

I just read an amazing article about an olympic skiier who won bronze after PSC and a liver transplant. Ok, so to give you some idea of what an amazing recovery sounds like - this guy was out of hospital after *4 days*, and skiing again after 2 months.

Wow.

Now that is pretty inspiring stuff! The next time someone is about to tell me not to overdo it I refer you to the above article... (although it does actually make me want to scream when people do that - why would anyone think I would actively try and do myself harm???!?!?!?!?)

I think I'm going to talk to the physios again tomorrow to get some more ideas about how to relieve this extraordinary tightness in my abdomen - I couldn't stand up straight now even if I tried. Still, this is a good little reminder about setting goals, and not allowing yourself to be 'ill'.

Incidentally I am considering asking to stay in hospital until Friday as they want to see me in the outpatients clinic on Friday morning anyway, so it would save a lot of to-ing and fro-ing. More news as I decide.

Day 12 update

2009-02-17T11:52:00.002Z

I'm feeling much better now, so that seems to have been an isolated couple of incidents this morning. None of the doctors seemed too concerned. They have set my new discharge date as Thursday 19th. The blood test levels are moving slowly in the right direction and they are happy enough that this will continue.

I have just had a long education session from one of the transplant coordinators regarding the drugs regimen that I will be on when I leave. They are going to start getting me to self-medicate under supervision for these last couple of days in hospital so that they can check I'm doing it right. There are a whole load of different drugs and the dosage is going to change quite a lot over the next couple of months as things settle down.

I've also learnt about what precautions to take with choice of food, how to look after my wound, and what the implications are for travel. Pretty much everything can be summarised as "be sensible, remember your immune system is weak". There is no such thing as a banned food, but anything which is more likely to contain bacteria is best avoided, particularly for the first 6 months.

I am going to have to come back to the clinic initially every week, probably on a Thursday. Fortunately this will be a dual-purpose visit: firstly for normal post-transplant monitoring, and secondly for clinical-trial monitoring. As the clinical trial is paid for by the drug company this means I will be able to take taxis back and forward to the hospital each time and claim it back.

I also learned today that because I had Primary Sclerosing Cholangitis in my old liver, and therefore had a more complicated type of transplant than most people, it means that I'm doing even better relative to most as the average ex-PSC patient is in hospital for several days more than the other transplant patients. So comparing myself to the record-breaking 8-days post surgery discharge that one of the nurses told me about isn't quite accurate - I'd like to think I'm still a record-breaker in my own special way!

Day 12 - Pain in the morning

2009-02-17T08:44:00.003Z

Not a nice morning so far. I've just had a really good night's sleep - around 8 hours. However at 6am I woke up with quite bad abdominal pain and had to get a top-up painkiller injection. I fell asleep again and woke up an hour later feeling fine, but then the pain started again around 7:45 and got worse for the next 30 mins. It comes in waves and is a mix of a sort of stomach ache with heartburn. It's in an odd position - not really over the wound where the pain has been before. I've just had another painkiller injection and it's dulled it a bit, though I'm still definitely uncomfortable. I'm hoping the next wave of pain isn't too bad.

Hmm. Doctors coming round within the next hour so I'm going to report to them and will report back...

Otherwise yesterday was very good. Once I'd got over the minor disappointment of a changed leaving day, I sat up out of bed most of the day and went for quite a few walks. I had a nice afternoon with Dad and Carole, and then in the evening my old school friend Alex came round and we went for dinner in the canteen. I ate a little more than usual and felt good about it!

Today is a little odd. As everyone thought I was going home today I have nobody planning to visit! So if you're reading this and fancy popping in, then please do feel free...

Update: moved rooms & maybe wednesday to go?

2009-02-16T15:58:00.002Z

Mini update: just been moved to room 21 from the large but annoyingly remote room 26. It's smaller but better-placed.

Also there is a note on the main hospital whiteboard saying I am currently estimated to go on Wednesday 18th. However, that's not quite what the doctor said to me, so let's take it with a pinch of salt.

Morning of Day 11 - Not going home tomorrow - Boo!

2009-02-16T10:13:00.003Z

Disappointing way to start the day. I've just been told I'm not going home tomorrow after all. One of the liver function blood tests they watch is Aspartate transaminase or AST, and they were hoping it would have returned to completely normal levels by now. However mine has not quite come down all the way to normal yet, so they don't want me to go until they've been able to monitor it and are sure that it is going to get there. It suggests that there was some minor liver damage during the surgery - not at all uncommon - and they want to make sure it heals up properly.

So, might be in here a few more days yet sadly. I'm not going to get hung up over a specific date and I intend to just go with the flow and keep doing my best to get better while I'm in here. Better be safe than sorry anyway. The boredom is more likely to creep back in now though, so visitors feel free to keep coming.

Apart from that yesterday was great. They took the last little fluid bag off me last night, so I have absolutely no tubes, needles, pipes or bags in me anywhere. The wound is healing nicely, and I'm getting increasingly mobile. I had 10 visitors yesterday - my room got a bit crowded at times. Was lovely to see everyone though.

More news as I get it...

Brief update

2009-02-15T10:03:00.002Z

Good news - the doctor just told me that I can have the nurse remove my little plastic pouch as my drain wound is basically dry now. Also they said not to worry about getting painkillers for breakthrough pain at home, and also that they are confident that the education session won't be something that stops me from going home on Tuesday.

In slightly odd news I did have a really strong urge to throw up this morning after breakfast but I decided not to give in and just relaxed and it went away. Feeling just fine now!

End of Day 9

2009-02-15T00:20:00.003Z

Brilliant stuff! I just had my last IV injection through my cannula and it has been removed. That means I have no tubes or needles or any kind left poking in to me anywhere, hooray! My plastic bag over the hole where the last drain was has basically only got a few tiny mililetres of liquid - and most of that was from yesterday, so I'm confident they'll remove the bag and just leave a normal dressing fairly soon.

The ward keep trying to bring me lunch and dinner despite the fact I didn't order any, thinking they must have lost the order. I keep sending it away and claiming my friends and family are bringing in food for me. Today this was true actually. Dad and Carole brought a delicious cheese bagel with grapes and a banana for lunch, and then I walked with them all the way to the far corner of the hospital to a costa coffee sat there for a bit and then walked back, including up one flight of stairs. I'll admit it was really hard, but very satisfying!

This evening Jane and Cecile arrived and we had our Singles Valentines Night. After my exertions of earlier they found a wheelchair and pushed me down to the restaurant where, having turned away yet more food from the ward, we had a pleasant meal (inifitely better than ward food), and then came back upstairs for a nice chat.

This evening I watched Harry Potter - Chamber of Secrets while catching up with some friends on email and MSN on my laptop, and until the last antibiotic injection when they agreed to remove the cannula.

In other good news today the doctor agreed that my kidneys basically seemed to be doing fine, so I can stop peeing in bottles for it to be measured, and just use a loo like a normal human being.

So tomorrow I've got a whole load of visitors coming, which is brilliant. Kathy is coming around lunchtime and I'm going to get her to come with me to get a sandwich (again, to avoid ward food), and then I've got several other friends all the way until the evening, when I'm going to persuade some more friends to come with me to the restaurant for food.

If I can keep that up all of Monday as well then I can avoid any more disgustingness - like today's gelatinous MSG'd globules of 'sauce' with incinerated tasteless chicken remenetants and watery-destroyed veg along with thrice-overcooked peas and ultra-dry roast potatoes that I took two mouthfuls from before ringing Dad and Carole to bring a swift alternative!

The only potential cloud on the horizon is if the transplant coordinators don't give me this drug training session on Monday earlyish then I won't be allowed to go home - they have to sign off that I'm capabable of self-medicating before letting me out. I will chase it up tomorrow.

Fingers crossed, but frankly I'm feeling great about life at the moment! It's simple thing like being able to go to the loo, and palatable food, that you never realise how much you'll miss :)

Oh and still (touch wood), the itch is basically gone. I'm just waiting for the last of the jaundice to fade - willing that to happen soon now!

Day 8 and morning of day 9

2009-02-14T11:04:00.002Z

More great progress! I managed to get up and have a shower yesterday which, while being exhausting and painful, was a real accomplishment and much better than just sponging myself down on the edge of the bed as I have before. I then also got told that the doctors were so pleased with my progress that they now want me to be discharged on Tuesday 17th rather than Friday 20th.

The other wonderful thing was finally have my last drain tube removed from my abdomen. There had been quite a bit of fluid coming out still so they'd held off, but the little plastic bag they've replaced it with temporarily has hardly filled at all so it's already healing up nicely. It's made my much more mobile.

I had lots of visitors last night, and while they were here I managed to walk all the way from my room to the hospital restaurant on the ground floor (albeit taking the lift). It was pretty tough, but I was really pleased to be able to manage it.

I've been doing my best to eat better but I've come to the firm conclusion that absolutely everything they produce here is absolutely disgusting. They even completely ruined an egg salad yesterday and as for the fish and chips even my brother chewed thoughtfully and said "wow, that really is foul". I'm now going to get people to bring in food, or go down to the shop or restaurant to eat as the quality there is at least a little better. I'm waiting for the nurses to start telling me off for not ordering any food, but I'm getting rebellious!

I had an excellent night's sleep last night - best so far. I've moved rooms (due to some room-swapping the ward needed to accomodate new patients), and I'm now in a bigger private room with a bathroom that isn't shared - room 26.

This morning I've managed, despite not having quite enough painkiller, to walk down and up two flights of stairs. When I've managed to top up the pain meds then I reckon I might be even more ambitious later. The Physios are essentially signing me off as sufficiently mobilised to leave hospital now, but I'm going to keep challenging myself before I leave on Tuesday.

I have my last antibiotic treatment last night, which will mean no more intravenous medicines, though I'll still need intramuscular jabs (with the very tiny needle) for heparin (blood-clotter) and painkiller topups (oxy-codine). Hopefully I can negotiate slightly stronger every-day painkillers to reduce my dependence on those injections.

Excellent, between that last paragraph and this I just got another jab actually, though the nurse had to zoom off after quicky as there's a *really* annoying woman just up the coridoor who spends her whole day wailing and whining and calling out (she apparently hasn't worked out the use of the call button for the last 30 times). She is clearly attention-seeking. Who does that? :)

Day 7

2009-02-13T09:04:00.004Z

Another good day today. I've found that one of the keys is to consistently opt for stronger painkillers - that lets me eat and move around much more comfortably which brings other benefits in turn.

In the morning I went for another ultrasound, which was very successful and everyone was pleased with the results. Didn't manage much breakfast, but did better with lunch having a vaguely normal small-ish portion. A doctor came to see me and said he was happy with my progress and that I would probably have my drain tube out very soon to be replaced by a bag instead so that it could start healing up naturally.

The physio came to see me after lunch and we went for a relatively long walk - all the way out of the ward and part of the way along the corridor, then back again. I then had a visit from my aunt, cousin, and second-cousin which was great, then had a meeting with a few people to talk about my progress. Firstly there was the clinical trial team who came to assess whether I was still eligible to take part, and they were happy my test results were good enough. Next was the post-transplant coordinator who delivered a pack of information about what happens next and gave me a vague indication that Friday 20th could be a possible day to leave. Finally I talked to a researcher who is doing a PhD on mental and physical outcomes of liver transplant surgery and agreed to fill in four questionnaires for her over the next year.

Then my friend Robin came to visit, and we chatted for a while and I had some dinner, then he and I went for another walk. This time I got much further - all the way out of the ward to the main staircases/lifts, then back again.

Later in the evening I had my I-V drip removed and told I would probably not need it any more as I'm now drinking and peeing pretty much fine. There is still a little swelling in my thighs and hips but I think it's going down.

So another good day - lots of people telling me I was doing very well for what they confusingly call Day 6 (surgery day + 6 days). I celebrated by staying up a bit late watching the last film and a half of the lord of rings. I also chatted quite a long time to my night nurse who turned out to be a huge fan of strictly come dancing and loved my insider gossip :)

Rest of day 6 and night time.

2009-02-12T08:28:00.003Z

I was definitely in a little more pain than during day 5, all though part of that is due to a downgrade of my baseline painkillers. Some of the fluid retention seemed to go down during the day, and my temperature normalised quite quickly. They changed my dressing and the wound looked pretty clean and in good condition.

I started on some solid food. I did ok at lunch with a few pieces of ravioli, but didn't manage much food at all at dinner. Generally the food here is not very good and tends towards overcooked/over-thickened.

My Dad and Carole spent much of the afternoon with me, and I also saw a couple of friends too. Had to cancel on my friend Alex in the evening sadly as I just felt a bit too knackered.

I slept reasonably well, though did experience an odd pain in my left-abdomen both front and back. My nurse has scheduled a doctor to come and talk to me about it, but reckons it's probably nothing more than a muscular thing. We overcame it with a top up oxy-codine injection.

Today I hope to get some feedback from yesterday's chest x-ray, and the blood and urine cultures to hopefully confirm I have no infection. Also hopefully the puffiness of my legs will continue to go down as my kidneys ramp up better. Otherwise it's about pain-management and when that's ok making sure I get myself up and walking again.

Dodgy morning - day 6

2009-02-11T09:42:00.003Z

I slept pretty well last night, only when I woke up at around 6am I felt a bit droopy and they told me I have a temperature of 38. They've taken some blood cultures this morning which will tell us useful things in about 48 hours.

In the meantime I feel a bit hot and bothered, a little bit in pain, and a bit dozy. Some of the doziness may be because I'm now taking Tramadol for pain instead of the painkiller I was on yesterday - Tramadol does have this effect on me.

I might call the nurse and ask for a top-up injection of oxy-codeine. The physio decided to not try and do anything particular with me today while I'm feeling slightly rough.

I'm yet to see any doctors on round, hopefully they'll give me the nod for soft solid food today - although actually i'm not looking forward to it as much now as I was yesterday as I suspect I'll feel a little nautious.

Day 5 - end of a great day

2009-02-10T20:50:00.002Z

Today has has a huge number of milestones in it.
This morning I was a bloated bag of tubes in fairly constant pain, and coughing a lot.

By tonight I have:

- had my nasal feeding tube removed
- cleared up the cough thereby removing the pain of coughing
- had my catheter removed
- had several drugs changed to oral varieties
- managed to shuffle-walk 30m unaided, then back again.
- had my nasal oxygen tubes removed
- had a UV scan of my new liver which was very successful.
- got up and had a wash and shave.

This has been an amazing day! Each step in itslf was fairly important, but together they really make for stunningly happy day.

Tomorrow is soft-food-starting day, which is very exciting. Also I'll have my last main drain removed, I hope.

Thanks very everyone's kind words of support that I've read so far, and continue to read!

Dave

Day 5!

2009-02-10T07:57:00.002Z

Hi folks,
Sorry about being a bit tardy. Now that responsibility for updates has gone back to me you're going to be a little at the whim of my energy levels!

I've had a hard couple of days. From later afternoon on Sunday I gradually became more and more bloated with trapped wind, and was increasingly uncofortable no matter what painkillers I took. By Monday morning I was really in a bad way and texted Dad and Carole to come in to help me get through it even though visiting hours weren't due for some time yet. I really did feel like I was about to burst!

Unfortunately each set of medics said that there really was nothing to be done about it apart from painkillers, and that it would just clear itself up. During the day yesterday I got transferred from the liver intensive care unit to Todd Ward - the general liver unit. From te moving about that I did for that, plus some back rubbing and moving that I did when Charles was visiting last night, I've gradually started get some easing going on.

Excuse the crudity, but I can't think of a single other time in my life where releasing gas was so looked-foward to.

I've been coughing quite a bit this morning, which is painful, but generally I'm feeling distinctly better. I'm hoping to be allowed to take some sips of water during today, and maybe even get my catheter out. Both of these would be major forward steps in the comfort stakes...

Oh dear, my writing style is definitely not so good while I'm on all these drugs. Sorry about that, but I'll do my best to update every day at least :)

Day 3

2009-02-08T13:35:00.003Z

This has come straight from the horses mouth, via his typist and secretary, Charles. Currently lying on the bed in a bit of a spaced out stupor (that took 2 minutes to say - ed), due to a particularly exciting combination of drugs that my blood is generously laced with. Some of the drugs are doing good things, and some are preventing bad things. Some are also preventing the side effects of the drugs that are doing good things. Some are a plain mystery... My most exciting toy is a magic button that I can push as often as once every 10 minutes for an immediate morphine-style top up. I like this button. It's a bit of a tight rope act, negotiating between some pain, but compus mentis, or happy as larry and high as a kite.

Medical updates: Yesterday's ultrasound and today's CT scan show the liver has taken very well, and is healing in nicely. Each successive blood test result shows an improving picture, with my ALTs having already come down from 1700 to about 500 (high is bad).

Progress update: Sat up in a chair for an hour today (first time), which was a great sense of achievement, but made me feel like a bit of a geriatric. Stayed in a constant heightened state of paranoia about someone tripping over my catheter line (Mmmm, catheter). Currently awaiting a bed in Todd ward, and as soon as one becomes available, I'll be shipped down there for the remainder of my stay in hospital. I remain utterly nil by mouth, until Tuesday evening all likelihood (no eating in front of me please, otherwise I may to beat you around the head with my full catheter bag.

Dave fell asleep here - we'll carry on later (-ed)

Ouch!

2009-02-07T14:19:00.003Z

It hurts! This morning, the doctor came round and took my tube out, so I can breathe properly. That meant that the sedative could be taken away, so I could wake up properly. However, with the waking up came the pain, and it all really hurts! Nevertheless, there is a silver cloud (apart from the morphine, that it!), and the surgeon who operated came around and told me that the operation went well, and that he would expect me to be out of intensive care tomorrow. My sister-in-law is visiting me at the moment, and she's doing most of the talking, since my throat is sore, and my mouth is really dry. I'm not allowed the drink anything, and all I can use is a swab to wet my mouth - it's not the most effective. She says that my facial colour is great - not yellow at all - go new liver! I had a quick chat with my brother on the phone, and am expecting a call from Dad soon. Visitors are good, and I am now welcoming all and sundry to come and see me whenever they get a chance. It really helps distract me, and it's pretty boring in here! I am on the liver intensive care ward on the second floor of the main building of Kings hospital - visiting times 1pm to 10pm, excluding 5.30 to 7. Tomorrow I'm probably going to be moved, but I'm not sure where to - probably the Todd ward or possibly the DH Lawrence ward. I don't know when visiting times will be there, but at that point I'll have my phone, so you'll be able to call. I look forward to seeing as many of you who can make it!

Thumbs up!

2009-02-06T22:43:00.002Z

I am still unconscious because I have a light level of sedative, so I won't be uncomfortable about the tube in my throat, which is helping me breathe. Unfortunately that is causing my blood pressure to be a bit low, but I have other drugs for that. I am being cared for by a lovely nurse called Becky, who has been tending my every whim, and she's looking after the multitude of monitors attached to me, and tubes feeding and drugging me. The doc reckons that they'll be taking the breathing tube out tomorrow afternoon, and waking me up, but there have been a few times when I have drifted into consciousness already. One of these times was when Charles touched my arm, and I woke up, tried to focus on him and then, when I realised I couldn't speak due to all the tubes, I gave him the thumbs up. First communication from a newly livered man!

Night night!

Out!

2009-02-06T18:10:00.002Z

I'm out of theatre, and have just been wheeled into the ICU (Intensive Care Unit). The docs and nurses are hooking me up to various machines, but I am away with the fairies. I'm not looking my best, and Charles describes me as 'a bit peaky'. I am very yellow.

The operation went 'ok', says the transplant coordinator, as they had to give me drugs for my blood pressure, which dropped a bit alarmingly. This is not particularly uncommon, though. The liver appears to be working (although I am very yellow), and the next 24 hours really is critical. Charles is going to pop in to see me when I'm ensconced in my room.

Over half way through

2009-02-06T16:04:00.002Z

Well, At about 2pm the docs were just getting ready to take out the old liver - this is taking a bit longer than I thought, but everything is going ok. I am remaining stable, with minimal bleeding, and the docs are happy with the way everything is going. However, I think it's taking a little longer than average, so it could be a while until I'm out. My brother is in the intensive care waiting room now, along with lots of other patients' family members, but he's got my laptop and several DVDs, so I reckon he'll be fine to hang around.

This liver is mine!

2009-02-06T12:37:00.003Z

This is it. The big one. I am currently under the knife in the liver operating theatre, having gone in at 1030 this morning. My brother and I were waiting and waiting to find out if this was going to be it, or whether another person was going to get it. We were pretty chilled, and I had the various checks - ECG, blood pressure, MRSA swabs. We strolled across to an x-ray department to get a new chest x-ray done, and within minutes, an anaesthesiologist came to find us, saying 'forget that, let's go'. The liver was mine! We rushed back to the ward, and I was told to have a very quick shower (with some antiseptic soap), put my stockings on (to stop DVT), and lie in bed. Sedative was given, and we all rushed off, telling people to move out of the way, and at one stage telling people in a full lift to get out as we needed it. Arriving at the theatre, I was given more sedative. Charles left, and I went in. A few hours into this procedure and I am unconscious, possibly with no liver in me (makes it a bit difficult to type). The procedure is 6 hours min, so I may get out some time after 1630, although I will remain deeply sedated for a couple of days. Expect an update this evening!

what happens next

2009-02-06T08:31:00.003Z

I got the call and am being driven to hospital this morning by ambulance. I've had some tests and am waiting to see whether or not there's a susitable liver available - should find out some time in the next hour or so. When I get to the hospital I'm going to firstly go through some checks and forms. They will test blood pressure, heart rythym, etc. and do blood tests. Then they will go over the consent paperwork that I signed and make sure I understand all the small print etc. Finally they will give me a little gentle sedation to just keep me calm while I'm being prepared to go into theatre. During this time my donor liver will be being flown/driven in, and examined by the head surgeon to ensure he is satisfied it is suitable. There is a chance that he may reject it, in which case I'll be sent home. All being well I'll be taken in to theatre, given general anaesthetic and have various tubes inserted. There will be a large ventilation tube into my throat, and several blood-lines from my neck, torso, and leg to allow them to re-route blood around my liver. They will put several electrodes on my skin to monitor my heartbeat. One team of surgeons will then get started preparing the donor liver by warming it, cleaning it, and getting the cuts clean and ready for stitching in. The other team will make a long incision below my rib-cage and a short one down to near my belly-button. They will start cutting the cartilage around the liver, and then clamp off the blood arteries and vessels and reroute them via the lines they put in earlier. Once this is done, they finally remove the old liver, then put the new one in place. Each tube is carefully glued and/or stitched to the new liver, and blood is pumped back through it. Finally they stick me up, and take me out to recovery in the liver intensive care unit. Over the next 24 hours I'll remain unconscious while they monitor me and introduce the immunosuppresant drugs. If there is no sign of rejection then they will start waking me up and checking that I'm responding properly before removing the breathing tube. I'll remain heavily sedated for another 24 hours or so while they being to remove some of the lines. At this time I'll get transferred to Todd Ward. I would expect to be there for around 3 weeks while they gradually take out more lines, ensure I start becoming mobile, and gradually start moderating the doses of immunosuppresants. Toward the end of this time I will be learning to time my own medication, and they will be preparing me to leave hospital. While I'm on the Ward I'll be very tired, and most patients become a little depressed during the first week or so due to the drugs and also the come-down after the excitement and anticipation. It is possible to visit in the afternoons up to 8pm, though I'd appreciate a text or an email before so that I can a) put you off if I'm not up to it, and/or b) make sure not everyone turns up at the same time. I will have access to email/facebook etc. on my laptop though I don't know how with it I'll be. The hospital website is Kings College Hospital. Bear in mind that the car park is enormously expensive, and always full (it usually has a queue of up to 20 cars waiting up to half an hour to get in). Public transport is best: Thameslink train to Loughborough Junction, or there are trains from London Blackfriars, London Bridge and London Victoria to Denmark Hill station. Anyway, I'm hoping someone in my family will post a few updates when I'm out of the operating theatre, and hopefully within a few days I'll be writing a new one myself! Wish me luck for some DeLiverance (geddit?)

got a call!

2009-02-06T08:20:00.000Z

i'm in an ambulance on the way in to kings. I'm only a backup patient but the main contender is apparently very sick so there's a 50% chance i'll get it. More details soon.

Role reversal and a great film

2009-02-04T22:44:00.002Z

Strange role reversal today. I was on the phone to my dad while he was in hospital after a hernia operation. As I was speaking to him he was woozy from general anaesthetic, and also tramadol (a strong painkiller), and was on a drip. He's doing absolutely fine, and will be back home tomorrow, but what was actually great was that he said that after seeing me have it so many times he'd been a bit worried about getting the cannula (tube) put in his arm, but actually it wasn't so bad.

It's good, I think, to realise that hospital is really not so bad. If you're in there then you're usually better off, or you shortly will be. Nice to be able to give Dad some sympathy, and to be able to be worried about him. A strange kind of relief.

Apart from a lot of stress about renewing my tenancy contract on the flat I share, today has been remarkable for another reason - I just saw a stunning film. It is called Milk, and stars Sean Penn. It's a beautifully simple, well-acted, well-directed and gimmick-free look at the gay rights movement in San Francisco in the 1970s and particularly the life of the first openly gay public official in the USA and the fight against hatred and bigoted attempts at legislating.

I was just blown away by it, and suddenly understood so much more about why coming out as a gay man isn't just something you do for yourself, but also something that you do for every other person struggling with themselves and how society views them. My favourite quotes: "We will not win our rights by staying quietly in our closets ... We are coming out to fight the lies, the myths, the distortions. We are coming out to tell the truths about gays, for I am tired of the conspiracy of silence, so I'm going to talk about it. And I want you to talk about it. You must come out. Come out to your parents, your relatives." and also "it is harder for them to vote against us if they even know just one of us".

I can't remember the last time that a film affected me so much. I guess I've always viewed gay activism as a bit of joke, something I was a little embarassed by, and I've joined in with dodgy gay stereotyping and jokes. I think I need to stop apologising, though don't worry, I don't intend to go around with a big "I AM GAY" placard.

... though I do love this advert by Stonewall:

Snow Day!

2009-02-02T17:30:00.005Z

Ok, that's better. Stomach's settled, I had some sleep, some chicken soup, made a snowman, had tea and hot-cross-buns....

snowy and squiffy

2009-02-02T11:20:00.002Z

It's an odd day today. I didn't sleep at all last night and had an appointment at kings to see my consultant at 10.30. However, by 9am i'd decided not to even try to get there as there's 6" of snow and it's still falling. So now i'm going to try and go to sleep finally (it's 11.30a.m.) only i'm suddenly rushing to the loo every 15 minutes with very squiffy innards. No idea what has brought this on, but I'M TIRED! Fingers crossed i'll get some rest soon or i'll go completely mad...

Clinical Trials and another week down.

2009-01-31T04:48:00.003Z

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...

2009-01-23T04:27:00.004Z

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

2009-01-18T09:15:00.001Z

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

2009-01-11T22:56:00.002Z

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

2009-01-07T20:36:00.003Z

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.

2009-01-05T04:19:00.002Z

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

2009-01-02T00:27:00.003Z

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.

Progress at last

2008-12-29T15:00:00.002Z

I just spoke to a really nice transplant coordinator at Kings who gave me a promising update. I am currently 5th on the blood-type-A waiting list, but one of the people ahead of me has voluntarily suspended themselves, putting me at least temporarily 4th. Of these, two are rather obese patients, apparently, who would require larger livers. I'd like to think that puts me 2nd in line for a liver of my relevant type.

Apparently they did a transplant on Christmas morning! I'm really chuffed to bits that finally there has been some movement. Come on delayed-Santa, bring me that transplant!

In other news my replacement car that I've bought will be ready on Wednesday morning, and my flat's heating has been (re)fixed (again) so we have heat. Life is good.

Merry Christmas

2008-12-25T23:13:00.003Z

I've had a really lovely Christmas thanks to my wonderful family. I pretty much ignored the central heating which broke down on Tuesday and just shut up the flat and left for my brother's place. I had a lovely evening in St. Albans with Charles, Kathy, and the lovely little Patrick, and then got up early the next day to drive with them all to Peterborough to go on a special "Thomas the Tank Engine" Christmas Steam Train Special at a special railway there. It was brilliant fun, and I got some great photos.

In the afternoon I drove Patrick over to Dad and Carole's in the front of my car (an exciting special treat for him apparently), and Charles and Kathy soon joined us. We've had a brilliant Christmas Day, lots of great food, good company, and fun had by all. Poor Patrick has had a cough and was up a couple of times in the night last night, but fortunately my insomnia had kept me awake and I managed to relieve his parents and get him back to sleep (for which I felt very smug).

I guess I never expected to have got to Christmas without the transplant, and I suppose that I would have gorged on a lot more food and been more awake in other circumstances, but I'm glad it went as it did. I'm now looking forward to a couple more days with the folks, getting my new car, and seeing various friends next week.

I had a bizarre dream last night where Kings called me to say I'd missed their call and they'd had to cancel my operation. Very confusing, especially when I complained they hadn't rung me, but for some reason they were telling me that someone from WHSmith had told them the wrong number. My mind is very wierd. In actual fact I'm assuming its still quiet at the moment and that I'll start feeling ready for the op. again come the first or second week of Jan.

Still... I'm not going to complain if it's sooner :)

PS Just counted and it's 9 weeks on the list as of tomorrow lunch-time. Will the early and optimistic statement I got of "could be tonight, tomorrow, or a fortnight, just be ready. You'll almost certainly get done within 2-3 months though" come back to haunt them/me? (well, it's already haunting me!)

No news is indifferent news

2008-12-23T02:20:00.002Z

About time I posted an update I think, but there's little to report. The meeting in hospital ended up being just a short meeting with a surgical registrar who told me only things that I already knew about the procedure, and ventured nothing more than "within 6 months" when I asked about the waiting list. I was irritated when he said "but you're surely in no rush?" but decided to just ignore it.

I got over the annoyance within 24 hours and feel just resigned to the fact that I have several more weeks of waiting ahead in all probability. For some reason the whole transplant list has severaly slowed down, and I just have to live with it.

I had a nice weekend. I went to visit friends on Saturday night to watch the final of Strictly Come Dancing (can't believe Tom Chambers won - he was rubbish). Sunday I relaxed all day and went on a rather pleasant date in the evening where I managed to say absolutely nothing at all about my liver for the whole evening (hooray for a modicom of normality).
Today after recoiling in shock at the estimated cost of getting my car fixed up for MOT I've decided to bite the bullet and replace it. Driving round car dealerships and looking at used cars was actually brilliant fun. Again, wonderfully normal. Finally, this evening, I went round for a really nice dinner and chat with my friend Pete who is back from Silicon Valley for Christmas, and caught up with him.

So it's good to be feeling ok-ish while on school hols, and I'm actually looking forward to Christmas at long last, rather than dreading getting there having not had 'the call'. Roll on 2009.

PS Thanks to everyone who has been in touch who is reading this blog. I'm very touched and humbled by your kind words.

Coasting

2008-12-18T00:34:00.004Z

I've definitely got a feeling that I'm sort of coasting along at the moment. I did finally get to sleep at just after 7am on Monday (the blogging must have been cathartic), and slept til 3pm. At that point my brother brought round my nephew Patrick, and that got me woken-up a bit as we took him on the underground (he loves trains), to a ball-park/soft-play area, and back on a bus. He *always* cheers me up.
Fortunately I slept really well Monday night, and went to work Tuesday morning. I got quite a lot of good work done, and headed off at about 2pm when I was beginning to flag. I went round to my Dad's house and sat and chatted with he and Carole. Fortunately his laryngitis has cleared up as I hadn't seen him for ages as we were all paranoid about me catching it.
I had a lovely surprise though. My step-brother Marc has very recently become a father to a very gorgoues little baby girl, Isla. Fortunately for all of us, Isla's mum was in the area on Tuesday afternoon and popped in to show off Isla and have dinner. I found it just wonderful and Isla and I took to each other very quickly - she dozed off in my arms while I sang to her. Definitely made me feel a bit broody!

I was fairly hopeful that the sleep had normalised a bit, but sadly despite getting to sleep by 10pm that night, I woke up at 2am this morning and didn't go to sleep again til 6:30am, so I missed work again today as I felt all washed-out and dopey again. Still - I did manage to read the entirety of "Drugs and the Liver", which starts off with a great detailed description of the anatomy and functions of the liver, lots about diagnosis of conditions, and finishes off with details about medications and their interactions with various conditions. Very illuminating - I'm sure it will enable me to be a very nit-picking patient next time I'm in hospital! I will definitely be leaving it ostentatiously by my bedside so that the medics know that I'm not clueless...

I'm really looking forward to tomorrow (well, today now). I've got my rescheduled consent-signing session at Kings, and I'm due to meet one of the surgical teams. Its a concrete appointment and it feels a bit like it could be progress. Apart from anything else I'll be able to ask again if they've done any A-type transplants in the past week. Watch this space for a report on how it went.

Insomnia

2008-12-15T05:46:00.002Z

Crazy thing, this insomnia. I'm actually sat here with my eyes drooping, and have been for the past 6 hours, but every time I lie down my brain is like a hive of bees - I just can't get it to shut down.

Every time I do think I'm relaxing, then I start noticing the itching, and then end up scratching. More often than not at some point I end up scratching so much that I draw blood, and then end up blotting away and trying to relax again.

This is a particularly bad night, which is a shame as the last couple of days have been pretty good. I slept pretty soundly after my A&E stint on Friday, then had a relaxed day on Saturday ending up at my good friend Jane's house with lots of friends having a christmas drinks party - I even allowed myself a half glass of mulled wine. Sunday I slept in til mid-day then pottered a bit before driving down to Egham to watch a dance competition in which several of my friends were competing.

It was great to get back to a competition and see it all happening, though of course I did feel a bit frustrated that I wasn't dancing myself. Still, it was particularly nice to see my partner Sarah doing really well - she's dancing for Oxford University while I'm not well but I do intend to steal her back as soon as I can!

A tiring day, and I felt physically and mentally exhausted at the end of it, and yet here I am, still awake at a few minutes to 6am on Monday, and I've given up any realistic chance of making it in to work and have already emailed in. Thank god they are being so understanding and supportive at work - I have no idea how I'd cope without that.

I'm going to make myself a nice hot bowl of porridge, watch some crappy TV then *hopefully* I'll finally feel like sleeping. Maybe if I'm lucky I can tempt my brother to drive over this afternoon with my little nephew Patrick - he always makes me feel better. We chatted on the phone today - its always cute to hear him say "he'o Unc Didi"!

GPs, Bureaucracy, and A&E

2008-12-13T00:57:00.002Z

Interesting day. As predicted my GP visit was utterly pointless. It was a locum this time and not only did he not know what primary sclerosing cholangitis was, but he couldn't really get a grip of encephalopathy either. Now considering that I'd been sent there to get checked to see if I was becoming encephelopathic as a result of my PSC this was clearly a problem. Eventually the GP proudly pronounced me to be jaundiced and that I should 'be seen'. I left with with the phone number for the transplant coordinators as he clearly didn't have a clue, and left.

I went to work for a few hours and got a bit deluged by people needing my help with things. Its nice to be wanted but it was a bit much given my current state.

Later on I rang King's transplant cooordinators myself who agreed that my GP had been as useful (and I quote) "as a chocolate teapot". They told me that if my symptoms were getting worse I should head to my local A&E. I did suggest twice that it would be easy for me to head to Kings A&E, but they quite sternly told me to go to my local hospital as otherwise their A&E people tended to get stroppy. Seemed insane to me given they have all my notes there, but what can you do...

So I left work and went up to the Royal Free A&E. They were very good and having arrived at 4pm I was in an A&E bed by 4:30 with my blood taken already. By 5:00 the doctor had discussed my condition at some length, and had done a few checks to see if I had encephelopathy (e.g. looking for tremors in my hand: 'liver flap', and seeing if I could draw a 5-pointed star to check for confusion). Both were fine, and so I just sat and waited for the blood test results to come back. My brother joined me at about 5:45 which was great, and by 6:30 the results were back and showed no particular great change in my LFTs, so they discharged me and gave me the blood results to take with me to Kings.

So all in all, inconclusive. I still know that my concentration is worse than before, and I'm more fatigued, but according to the blood tests there's been no great change, so nothing to write home about. Certainly won't make any difference in terms of waiting lists and so on, so I've just got to hope - in the nicest possible way - for people to get donating organs and get my transplant list moving again.

An expensive and disappointing day

2008-12-11T16:44:00.002Z

Being awake until 3:30am is turning in to a habit. I just seem to be wide awake when I go to bed, and completely dopey during the day. Not only that, but I'm getting forgetful. When I came home from work yesterday I parked my car in a bay that clearly says will be suspended from 9:30 to 5:30 today. I thought this wouldn't be a problem as I'd be off at work.
This morning, when I woke up feeling exhausted it failed to cross my mind at all, and I sogged around on the sofa (obviously taking yet another day off work), until about 10:30 when I went back to sleep for 4 hours. When I woke up there was a text from Camden Parking Services telling me my car had been impounded.
To cut the long story short, I just had to take public transport to the place, pay £260, and drive home.
This is definitely not like me, I get paranoid about these things and don't make silly mistakes. I'm also just feeling generally 'off'. Just not concentrating as well on anything. It all points toward hepatic encephalopathy (brain inflammation due to liver disease), and it concerned me enough to ring the transplant team at Kings.

They've told me to see my GP tomorrow who can assess whether I am indeed suffering from encephalopathy, and can also find out more about why my intestines seems have stopped bothering very hard when it comes to digesting food (I shan't go into the unpleasant details...)

I kind of know its encephalopathy from previous experience, but if the GP confirms it I will be referred to a registrar at Kings who can take it further to make sure I'm looked after while I'm waiting on the list. I asked about the list as well, and I was told it had been very quiet for the last week or so, and that nobody on the A list has been transplanted.

So all in all an expensive, and disappointing day.

The waiting game

2008-12-09T17:25:00.003Z

When you're just sat waiting for the phone to ring then you look forward to any concrete dates and deadlines. One of those was yesterday - I'd been looking forward to going to Kings to meet the surgeon and anaesthetist and signing consent forms. Obviously I'd kinda hoped I'd be transplanted before I'd reached that date, but at least it was something that would get me more ready for the op.

I'd been feeling quite washed out over the weekend - my energy levels are just terrible at the moment. I went to work on Monday morning but mostly just sat and stared at my computer screen. I went over to my Dad's at mid-day to have some lunch then headed home to have a quick cuppa before taking the train over to Kings. It takes about an hour, and it was bloody freezing! Still, I got there about 4pm with 15 minutes before my appointment.

There was immediate confusion at the liver outpatients reception when i arrived, and they asked me several times if I was sure about the date. Believe me I was *100%* sure that I'd been told to come today. Eventually someone in the transplant office came to apologise that she'd managed to give me the wrong date as she was looking at 2009. I just felt so deflated I couldn't even be bothered to complain much about it. Plus I don't think it would have achieved much.

So they've given me a letter with an appointment date of Thursday 18th instead. Again, I'm hoping I'll go in before that date, but then this process is just endless!

I HATE the fact that they get annoyed if I ring up to ask what my current position is on the waiting list. I KNOW that no matter what the position is it doesn't guarantee that we'll all be seen in order, and I'm completely happy that they can't give me a date. I'd be quite happy to just be told how many people they've treated in the last week or two, and what position I currently am.

Disappointingly we've now reached a time where if I go in any time soon then I'll be in hospital over Christmas. Though I'd still much rather that than having to wait much longer. I'm definitely going downhill a bit at the moment - I've just taken another day off work today as I slept so badly. I'm sure some of that is nervous stress about this bloody operation.

The stupid thing is that I'm not actually particularly stressed about the op. itself, its just the waiting, and waiting. I'm sat willing the phone to ring, then jumping every time it does, then dealing with disappointment. I keep not planning on going out or doing things with friends as I'm half hoping that I won't be able to keep to any organised time anyway, then as I get closer to the time I feel deflated that I've still not heard anything so I start thinking I'll just sit at home by myself in any case. Its stupid, I've had some lovely evenings, and the last thing I want to do is really let myself get in to an 'ill' mentality.

I've never been through anything like this before. I feel just so powerless and for someone who is a bit of a control freak like me, its just a nightmare. It's hard to believe I can still find new ways to dream about the operation and the 'call' each night but I'm managing it, and I'm waking up disappointed every morning that it hasn't happened.

Strange thing is, as my brother pointed out, when this is all over, I'll look back and it'll seem like the operation happened so quickly. But, for now, the wait goes on...

6 Weeks down: Some interesting links

2008-12-05T17:41:00.002Z

After a slightly crappy 24 hours with tiredness and gut-ache, I've spent a while looking round blogs and such for other people who've had transplant experiences. These ones were rather cheering:

http://thelivertransplant.blogspot.com/ http://carlanddawn.blogspot.com/ http://www.thedunkles.blogspot.com/I also saw an interesting article on BBC News featuring some comments by mc consultant:

http://news.bbc.co.uk/1/hi/health/7765767.stm

Anyway - exactly 6 weeks since I was listed today. Hoorah for me. Impatient now though - hurry up donors please...

Kathy had an accident but is ok

2008-12-03T10:53:00.004Z

What a day, I just rang my Dad to tell him about the TV program, and he told me that Kathy, my sister-in-law had been involved in a car accident. She's fine now, just shaken up with some bruising, but her car skidded on ice and she went off the road and rolled over. Thankfully Patrick had just been dropped off at the childminders, so he's being looked after. My brother Charles is now by her bedside in A&E in Welwyn Garden City while they do some last scans and make sure she's fine to go home.

This is after Charles came off his bike just over a week ago and ended up in an ambulance. Let's hope that this is the end of their own brushes with the medical profession.

Kings College Hospital Liver Unit on TV!

2008-12-03T10:25:00.003Z

For those of you in the UK:

Hospital Heroes episode 4 - A father risks his life to save his baby daughter with a liver transplant
(this link will only work for another 10 days or so, and in the UK only. It's also available on BBC iPlayer or Virgin Media Catch Up TV on Thursday 27th Nov. screened at 9:15am)

Made me very emotional watching it all, but most specifically watching how hard it was for the family waiting outside, but it was very interesting!

... and down again

2008-12-02T16:48:00.002Z

I'm not quite sure how it is possible but when I rang up the transplant coordinators at Kings today on the pretence of asking about accomodation for family while I'm in hospital, I was told that apparently I am currently number 7 on the transplant list. How it is possible to officially move down is difficult to know.

There are two people I tend to speak to in the transplant coordinators office. One lady is extremely helpful and tells me all about the state of the waiting list, albeit with caveats. The other one, who i unfortunately get more often, is much more cagey. Today's line was "David, you need to get it in to your head that it is impossible for us to give you a meaningful number for where you are on the list."

I did try to explain that I could just as easily leapfrog people above me as be leapfrogged by people below, and finally she caved in and told me I was 7th. Trouble is, I don't know who she is including, or whether she is judging the list in the same was as my consultant did last week. Still, at least she did, once again, confirm that the Blood-type A list is moving very fast at the moment and that I need to be ready.

The itching and sleep problems are gradually getting worse, and I'm occasionally now having to take some painkillers (albeit only Paracetamol) for a dull aching feeling around my liver. Still, I know that despite that I'm still much fitter and in better health than pretty much everyone else on the list, so roll on the operation.

Feelings about organ donation

2008-11-30T11:05:00.003Z

Another week gone and no news yet. Given the dramatic move up the waiting list (as of last week) I'm back to feeling a little jumpy each time the phone rings. I think the difference now is that I don't really feel like there's too much more to get organised at work to ensure they can carry on without any problems, so I just feel more calm and ready.

I had some interesting conversations with friends last night at my housemate Nick's 30th birthday. Mostly I've been concentrating on what's going to happen to me when I get the phonecall, but I've been asked by lots of people how I feel about where the organ must be coming from.

To be honest I don't tend to really think about it very much, as it is just too bizarre to think that someone else has to die in order for me to have this operation. I guess my general outlook on life is very much that these things just happen, at random, and that the fact that transplants are happening at all are an indication of people's generosity and willingness to help others.

I think that recent discussion has been very interesting about how Britons are so poor at donating organs in comparison to other European countries. I think it is probably more about a certain British reserve about talking about death, and also a natural desire to leave families alone when they are with loved ones who are dying. I think most people have no idea how easy it is to get on the register though. Literally you can go to the donation website and fill in a very short form, then just ensure you tell your family. If you haven't, then please do it now. I hope, like me, you feel it would be good to know that even out of the worst event there could be the amazing silver lining of helping other people live.

Maybe the next blog update might be more interesting - here's hoping.

Moving on up.

2008-11-24T12:51:00.006Z

I have just returned from a meeting with my consultant at Kings College Hospital, and I'm pleased to say that apparently in the past 2 weeks I've moved up from 12th on the blood-type-A list to 6th! Practically speaking I'm 3rd in line for my size of liver, so really the call could come at any time now.
A good thing too, as my health is gradually deteriorating. I'm at the point now where the itching is waking me up in the night, I find it hard to get to sleep before about 2am, and I am in desperate need of sleep in the mid-afternoon. Its all caused by mild encephalitis - brain inflammation caused, in this case, by the high level of unfiltered chemicals in my bloodstream. Essentially my liver is no longer able to break down and filter these substances as it should as it is getting scarred and also blocked up with bile acids.
Still, despite all that I'm still getting to work pretty much every day, and keeping up some sort of social life. I'm no longer doing any class-teaching so its more of a desk-job at school but its great to still be able to be helpful and contribute something useful. At the weekend I went down to Oxford to visit Sarah, my dance partner. She's currently competing on the university team while I'm not able to dance myself. We had a bit of a practice and a good catch up.
On Sunday I spent most of the day with my brother and sister-in-law Charles and Kathy, and my gorgeous 2-year old nephew Patrick. Here's a few recent photos of the general fun that Patrick and I have been having!

Anyway, thanks to everyone who's been asking after me and reading this. I'll try and post a bit more frequently, and don't worry I'll definitely post on here as soon as I get the call!

It's a bug's life...

2008-11-11T18:53:00.002Z

I've just had two days off work with some sort of strange fluey-ish/stomachy bug thing. Its remarkably similar to something I had about a month ago so I'm wondering whether it might not even be a bug but just a bout of 'liveryness'. Either way, not very pleasant, and I spent most of the time in bed or suffering from squiffy innards (to put it politely).

The timing of these things is particularly irritating. Both this one and the last time round seemed to start on a Monday, and lasted 2 or 3 days, which manages to knock out the majority of my school teaching which is mostly timetabled early in the week. I still have to set cover-work for the classes, of course, and I keep feeling guilty that the poor little buggers aren't getting much of a good deal. Fortunately I've now told most of them why I've been off a fair bit, but that still doesn't make it much better, nor for my poor colleagues who are having to cover the lessons.

I also feel a bit giulty for Nick and Sarah, my flatmates, who are doing a truly wonderful job of putting up with me sitting about looking sorry for myself and failing to help them with housework while I waft back and forwards from bed. I've made a large vat of turkey soup today though which I shall hope to use to make some amends!

Frankly the whole thing is a bit tiresome, and serves to underscore yet again just how much I want to get on with the damned transplant. At one point yesterday I even managed to get a bit excited when the next year's list of amateur latin dancesport national ranking competitions was published. With a bit of luck I'll make at least 3 of them toward the end of next year once I'm better. And that is the thought I shall be sticking with - focus on positives!

Waiting list update

2008-11-05T17:02:00.003Z

I've just had some really interesting insight in to the state of the waiting list. Apparently I am currently number 12 on the blood-type A waiting list. In the past week and a half at Kings they have not had any 'A' livers available - they do come completely at random so its impossible to extrapolate from that.

To complicate things significantly they would not necessarily treat all 11 people above me before getting to me. Fortunately I am one of the most straightforward transplants they have waiting in my blood group due to my relative good health and fitness. Many of the patients above me are waiting for multiple organ transplants (e.g. both kidneys and liver), at least 5 are very heavy (requiring larger livers), and some have other complicating health conditions which would mean a much smaller portion of livers would be suitable for them. It is therefore quite possible that in many cases they would jump over many of those waiting before me.

So, a very uncertain picture, but I do feel more comfortable having a better idea of what is going on in their decision-making process.

In the meantime I am getting on a little better at work now. I am starting the process of handing over some of my classes to a supply teacher right now, as frankly my energy levels are not very good at the moment and I would imagine are unlikely to improve hugely. The kids have received the reasons why in their stride, with several of them speculating quietly whether I might in fact just be an alcoholic (not maliciously, they just can't resist being amusingly cheeky)! Generally they've been very nice about it, and seem to appreciate the fact that the school is managing the situation carefully.

So, a more positive picture, and I'm glad to understand the whole thing better. I'm going to have a meeting with a counsellor on Friday to make sure that I don't have any more falling-apart days like Monday, and to stay positively focused on keeping well, staying fit, and just being calmly ready.

And finally some great breaking news research that is highly relevant to me:
http://www.medscape.com/viewarticle/582920

Being feeble

2008-11-03T23:03:00.002Z

Two blog posts in two days is a bit keen perhaps but today was a bit notable. Well, actually it was a bit crap. First day back at work and I was a bit of a mess. I can't really figure out why but I got ridiculously anxious about the whole thing, and went around in a bit of a daze. I was staring at the wall one minute, then feel stupidly upset the next. After 2 double lessons (6th form only luckily) I just decided that I really wasn't up to the slightly greater challenge of my GCSE class in the afternoon and went off to my dad's instead. After moping on the sofa there for an hour or so I went back home and fell asleep for 2.5 hours, and have been an immobile lump on the sofa all evening.

I feel really feeble about it though, and rather angry at myself. I might well have weeks or even months to go yet and I really can't go around being weak and wimpy the whole time. Everyone at work is being incredibly kind and understanding, and they have a teacher in from tomorrow who will mostly be doing cover but is ready to take over my lessons at a moments notice if I'm called up. Its brilliant planning really, and I'm so damned lucky to be in such a supportive environment. The last thing I want to do is to lose my backbone at this point and let my colleagues and kids down while there is still plenty of work that I'm perfectly capable of doing.

Anyway, I'm hoping that I'm going to wake up tomorrow feeling less feeble, and just get on with it. If I throw myself in to work then hopefully it'll take my mind of the whole malarky. I just need to stop jumping every time a phone goes!

One week down

2008-11-02T22:54:00.003Z

Its a very odd process, this waiting. I get a little jumpy every time the phone goes, or every time I think my phone may have been out of hearing range, or just every time I think about the call! I must have dreamt every bizarre combination of events surrounding this bloody phonecall each night so far, but in the end I still don't know if I'm hours, days, weeks or even months away.

Its definitely time though. My eyes will start glowing if they go any more yellow, and the itching is getting increasingly severe - I actually wake up with aching fingers some times as I've been scratching so hard during my sleep.

Really its quite amazing that I was so well for the last 3 years since I was diagnosed and had my first blip. The consultant tells me that from my medical imaging (MRI, X-Ray, CT etc.) my liver looks among the worst of all his patients, and yet I've been among the healthiest. Considering that I've been able to do so much dancing, and move back in to full time teaching work as well, it's quite remarkable and I consider myself incredibly lucky.

Over summer I started showing signs of increasing bilirubin (the yellow jaundice pigment) and then right at the tail end of August I suddenly had severe pain and was admitted to the Royal Free Hospital (London's other major liver unit) where they dsicovered that a stent (tube) that had been placed in my bile duct 3 years ago had slipped and was impacting on my duodenum. After some morphine, a minor operation and a week in hospital I recovered but it definitely hastened the decline.

Rather scarily my consultant at Kings had to apologise that they should have apparently removed this stent after only one year in place, and I was all ready to transfer my care to the Royal Free. Fortunately though I was pointed to the survival statistics for liver transplants at all the UK centres and they are almost twice as good at Kings than the Royal Free, so I'm staying with treatment there. (if you're interested the data was at http://www.rcseng.ac.uk/surgical_research_units/docs/Liver%20Transplant%20Audit%20Report%202007.pdf - useful stuff from p22 onwards).

So here I am sitting and waiting for the call! Fortunately the second day I went back for my arterial blood gas test wasn't anything like as painful (they got it first go!) though I still have big bruises and aching all up my forearms from the first one.

I'm back to work tomorrow morning and not really looking forward to it - hard to concentrate on teaching when you know you're about to be whisked off for a major operation. Everyone of my friends and family have been so incredibly supportive, as has everyone who has already contacted me from work.

I just really, really, hope the call comes soon...

I'm back!

2008-10-27T17:25:00.002Z

Hello Dear Reader,
I am back. It is now around 3 years since I was diagnosed, and having had my ups and downs (plenty of ups mostly), its finally got to the time where I need the liver transplant. Last week I met with Dr. O'Grady who got me re-listed to the transplant register as of Friday 24th October.

This time round the waiting list is much, much shorter. I am blood type A-neg and there are only 15 of us A-typers on the waiting list for the London-and-south England region. For some reason A-type donors are dying a lot a the moment with suitable livers. Grim, but true.

So I have been told to keep my phone on night and day - the call could come literally at any time now, and almost certainly within the next 8-12 weeks. Its not a strict order of waiting list - they take each liver and try and match it for size with each person from number 1, so given I don't know the shapes and sizes of everyone else waiting then its hard to tell when it'll be. I'll write some more about the operation and my recent medical experiences soon but I have something to get off my chest first!

Today I had to go in to Kings College Hospital again for two pre-transplant tests. The first was a chest X-Ray for the surgeons to use to plan the op and check my size etc. I think. The second is an Arterial Blood Gas test which is like a normal blood test only they have to dig rather deeper to get to an artery instead of the nice easy surface veins.

That's the theory - and its supposed to hurt a bit. Well I'm now writing this with plasters and bandage all over both arms and with a great deal of aching after a f***ing horrific afternoon where the registrar took 6 goes and failed to get a sample. He did, delightfully, hit several nerves on the way, cause some internal brusing, swelling and bleeding, and have me in such extreme pain he drove me to tears, however. After his 6th go he said "It doesn't seem to be my day today, I'll ask my colleague to have a go". His colleague looked about 16 and had been watching curiously and was clearly being taught about how it worked.

Fortunately they gave me a 'break' where I phoned Charles (my brother) and he told me to just get out of there and do it another time. Good advice too, it was painful enough even just getting home with these aching arms. Sadly I *do* apparently have to have this test done pre-op, so I must go back in a day or two to subject myself to more torture. Stupid thing is that last time around it hardly hurt at all and it took one easy attempt.

So, the joy of it all is flooding back to me. Thank god (if atheists are allowed to do that) that it's half term holiday at least.