Happy 3 month liver birthday

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

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

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

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

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!

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

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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

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

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

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

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

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

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

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

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

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

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

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

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...

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)

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

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?

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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!!

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

(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...

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!