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!

Night 16

3:45am.

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

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

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

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

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

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

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

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

Day 16 - More disappointment

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

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

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

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

Day 15 - Feeling better about it all

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

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

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

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

Fingers crossed then for tomorrow.

LEAVING CANCELLED!

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

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

Day 15 - Leaving day & Multiplying Moaners

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

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

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

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

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

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

Roll on the journey home.

Day 14 - Homeward bound tomorrow!

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

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

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

So I will be going home with the following drugs:

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

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

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

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

Oxycontin - a strong opiate painkiller

Paracetamol - an additional background painkiller

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

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

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

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

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

Day 13

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

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

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

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

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

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

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

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

Day 13 - Loudmouth Linda

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

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

What fun.

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

More later...

Olympic record post PSC-transplant!

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

Wow.

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

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

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

Day 12 update

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

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

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

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

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

Day 12 - Pain in the morning

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

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

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

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

Update: moved rooms & maybe wednesday to go?

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

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

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

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

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

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

More news as I get it...

Brief update

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

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

End of Day 9

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

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

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

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

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

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

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

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

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

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

Day 8 and morning of day 9

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

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

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

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

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

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

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

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

Day 7

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

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

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

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

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

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

Rest of day 6 and night time.

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

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

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

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

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

Dodgy morning - day 6

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

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

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

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

Day 5 - end of a great day

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

By tonight I have:

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

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

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

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

Dave

Day 5!

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

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

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

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

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

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

Day 3

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

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

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

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

Ouch!

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

Thumbs up!

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

Night night!

Out!

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

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

Over half way through

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

This liver is mine!

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

what happens next

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

got a call!

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

Role reversal and a great film

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

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

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

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

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

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

Snow Day!

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

snowy and squiffy

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