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...

Clinical Trials and another week down.

Sorry it's been a week, my tactic of letting the days go by without noticing is maybe working!

I seem to have been on the phone with Kings College Hospital all week about various things. Firstly, on Thursday I had an appointment to discuss my participation in a clinical trial of a new drug for immunosuppression post-transplant. There was a lot of faffing about to change the time, but eventually I got there at 2pm on Thursday and had a really interesting chat with a surgeon and a nurse. Basically the drug, Everolimus, is there to supplement/partially replace the usual immunosuppresant: Tacrolimus. The thought behind it is that initial studies have shown Everolimus to do as good a job at immunosuppression, but be much gentler on the kidneys than Tacrolimus (which can cause some kidney damage). It sounds like a win-win to me, so I've signed up for it.

Secondly I've changed my consent form for the surgery. I used to give consent to receive either a full liver or a half a liver (split-liver) from a donor, but having discussed it with my hepatologist, and having done some research I've decided that while I am keen to get the op. done, I'd rather wait for a whole liver to become available as the outcomes are better.

I'm seeing my hepatologist for my routine appointment on Monday, but I don't expect any particularly interesting news. I'm still top of my list, but as I am probably one of the healthiest people on the list (as I have no abdominal water-rentetion - ascietes, no kidney disfunction, nor signficiant brain impairment - encephalopathy) then I reckon I've probably been leap-frogged a few times by some very ill people. Apparently the hospital has been very busy with transplants recently, so unless I've been very unlucky and none of them have been medium-sized A-type livers, then I'll assume that's the reason. Still I did get a tongue-in-cheek promise from the very friendly surgeon and nurse I talked to that when they were both on-call this weekend they would keep an eye out for something for me!

Sleep-wise I'm all over the place! Last night I didn't get to sleep til 7am, then slept til 12. I slept again from 2pm to 6pm, then from 9pm to midnight. Not surprisingly I'm now as wide awake as can be. I've finally finished the entire series 1-7 of The West Wing (it was absolutely brilliant), and I've ordered something called The Wire, series 1-5 from Amazon which is apprently also brilliant so I'll get stuck in to that at some point too.

So here we are, 15 weeks on the list, and 2 weeks since the last call (the false alarm). I arbitrarily plucked the figure of 3 weeks out of thin air as the time I expected to wait for the next call so who knows - I was right with my completely arbitrary mid-January estimate for a call last time!

Positive thoughts toward the Kings liver unit please to get them to hurry up.... and thanks for reading!

I'm really not enjoying this...

Its 4:30am on the morning of Friday 23rd. My sleep pattern is completely off now. I'm falling asleep between 5 and 6 in the morning, and waking up around 2 in the afternoon. I then sometimes need an extra couple of hours of nap around 5pm and/or 9pm.

I've watched my way through 5 and a half series of the West Wing in the past 2 weeks (22 episodes @ 45 mins each per series). Most of that is at night.

I'm doing pretty much no exercise, almost nothing social, and still feel just a little bit numb after the weekend's excitement. I keep looking at my phone willing Kings College Hospital to ring, but of course they haven't yet.

Well, I tell a lie - they did ring on Monday to see how I was feeling, which was nice. The transplant coordinator on the Sunday morning had been concerned about my emotional state for the period following the disappointment, and it was nice to receive follow-up.

Apparently it was quite unusual to ask me to drive in to hospital that night, but they were really busy with other things and it helped them out. They were impressed at how fast and numerous my friends and family were to respond, which makes me feel very lucky.

So I remain top of the list effectively, in as much as there isn't anyone above me with my size of liver. How long I have to wait for the call now is anyone's guess. The old mantra (it could be tonight, it could be some weeks) has been repeated.

I just can't describe my state of mind at the moment. Positive - in as much as something finally happened at the weekend. Negative - as I'm feeling like a totally lifeless lump with nowhere to go, nothing to do, and nothing to contribute to the world while I'm waiting. I'm excited and scared, tired and frustrated. Listless.

My poor skin looks a mess. I'm scratching it so much I have small scabs all over the place where I've bled. They get scratched off and they grow and get a bit worse, and it goes on. (Sorry I know that's disgusting).

I have a small blister on my hand where I was rubbing and scratching, and it's bright yellow as the liquid filling it is, like everything else in my body, full of bilirubin.

I just must have scratched something right near a vein earlier tonight as I absolutely gushed blood for 10 minutes out of this tiny, tiny scratch. It scared the hell out of me, but luckily eventually stopped. (I don't clot quite so well at the moment - another symptom).

It's cathartic writing it. I refuse to become a negative drag on everyone else, so I don't really say it anywhere but here. I'm thinking it, but I'm also thinking, endlessly, of all the wonderful things I'm going to do when I'm well.

This may well be another of those big life battles, but damn it all, I'm going to win, and when this bastard thing is out of the way - well, watch out world!

Got the call - but it was a non-starter

I've just come back from a dramatic night at hospital. I got the call that a liver was available late last night and zoomed in, as did my family and friends. I had to wait until 8am this morning until they finally told me that unfortunately now that they had the liver back in the hospital after retrieval, it was too small for me, and it would be going to someone else.

I'm exhausted and going to bed now, but I'll post more on the subject soon!

Time flies

Well, that's good - its late on Sunday already. Time is going by quite fast, and I'm quite happy to let it do that. I'm not doing anything productive, nor really doing any work, but I'm sort of zombie-ing it out. I bought the complete series 1-7 of The West Wing on DVD which arrived on Saturday so when I'm awake at nights its been enjoyable to watch some of that.

I'm still *always* waking up at around midnight and not getting to sleep til 3 or 4 at the earliest. In fact its 11pm now and I can feel myself getting gradually more awake. I'm just giving in to it now as battling just makes me miserable.

I'm occasionally looking at work emails but it sounds like they're getting on fine without me. My energy levels are pretty low so I can't see myself achieveing much even if I went it to work at the moment, though I'll try and put in at least one appearance this week I think.

I'm going to consider a few options of excuses to call the hospital tomorrow to try and get an update. Not that it makes any difference in the end, but it would be nice to feel there's still progress going on.

I went to see my family today. I spent quite some time with my brother and nephew particularly (who tired me out no end). Little Patrick was rather cute when I was falling asleep on the sofa early in the evening and kept piling cushions on me to "keep a warm unc didi", and bringing me some of his Thomas the Tank Engine toys while I was sleepy.

Anyway, time marches on. In a melodramatic moment of feeling down during one night I started writing a crap poem about how I felt, but luckily for you I never finished it and have discarded it. It was terrible. I always get urges toward the melodramatic but frankly it does nobody any good to give in to these things!

Holding pattern

I managed to sleep for 13 hours last night, which is a record for the last few months. I still woke up at midnight, but just managed to lull myself back to sleep fairly easily this time.

Unfortunately I woke up feeling woozy, and stayed pretty washed out all day. In fact its 20 to 9 in the evening and I'm feeling exhausted again so I'm heading to bed shortly.

The only update I have had from the hospital is that last week they did 4 transplants. However the person I spoke to didn't know what blood types they were so it doesn't leave me any-the-wiser. I really didn't want to be waiting in to the new year/new term and so these weeks feel very wierd. I have a suspicion that its not going to be long now but I don't really know what to do with myself. I'm willing the days to go by, but as everyone knows the more you want time to pass the slower it appears to.

I feel very much inclined to just sit at home and do nothing and zombie my way through the remaining wait. This is a new feeling, as I've always wanted to do things and achieve things before, but somehow I just feel 'usefuled' out. It really is time for this damned operation now...

Back to work... or possibly not.

It's 4:20am on Monday morning of the first day of the new school term as I write this. Since sleeping all day last Thursday I've got locked in to a cycle of sleeping during the day and being awake all night. On Saturday I forced myself to stay awake all day anyway, but still only slept for 45 minutes before becoming wide awake at midnight and staying up til 7am. So today I just gave in and slept during the day instead as otherwise I'll make myself ill through lack of sleep.

I've just emailed in to work to let them know I won't go in today. I'm going to head to bed shortly and try and get some sleep, and then later today I'll head home to my flat and experiment to see if I can maybe sleep better in my own bed than at my Dad's. I hope not, as I've enjoyed being at Dad's, and also my flatmates are off skiing at the moment so it'll be a bit dull at home.

No news from the hospital, of course. I shall have to think of a pretext later on in the week to phone them and find out if there's been any movement. I'm sure I must be completely transparent, but then at this point who cares!

In to 2009

I'm round at my dad's house at the moment being given TLC as I've got a horrible bug of some sort. It's probably just a bad cold with a slight temperature, but I feel pretty dreadful. Given I'm not that energetic at the best of times then something like this makes me feel exhausted.

It all came on pretty suddenly - I just sneezed a few times yesterday and my nose started running during the NYE party in the evening. I rang the hospital to let them know and they said it shouldn't be a problem unless it goes to my chest and I need antibiotics of some sort. That's a relief - I don't want to be missing out on a transplant because of a cold!

Otherwise yesterday was a lovely day. I picked up my new car which is an absolute joy, and successfully got rid of my old one with the dealer none the wiser about the amount of work it needs to pass an MOT. I couldn't resist coming round to Dad's to show it to him, and then headed back home to create a costume for the "2008 events/people" fancy dress party last night. I went as the Chinese Earthquake - slightly tasteless perhaps but fun to do.

Today I've slept pretty much continuously for 15 hours until 7pm, then drove with the heating on full blast to be looked after by Dad and Carole. Having had some home-made soup and lots of hot drinks I'm sure I'll be on the mend very soon. I'm just hoping that I'll be able to sleep now having been asleep so much in the day.

Progress at last

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

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

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

Merry Christmas

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

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

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

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

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

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

No news is indifferent news

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

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

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

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

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

Coasting

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


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

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

Insomnia

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

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

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

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

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

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

GPs, Bureaucracy, and A&E

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

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

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

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

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

An expensive and disappointing day

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

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

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

So all in all an expensive, and disappointing day.

The waiting game

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

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

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

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

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

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

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

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

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

6 Weeks down: Some interesting links

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

http://thelivertransplant.blogspot.com/
http://carlanddawn.blogspot.com/
http://www.thedunkles.blogspot.com/

I also saw an interesting article on BBC News featuring some comments by mc consultant:

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

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

Kathy had an accident but is ok

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

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

Kings College Hospital Liver Unit on TV!

For those of you in the UK:

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

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

... and down again

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

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

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

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

Feelings about organ donation

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

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

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

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

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

Moving on up.

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

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

It's a bug's life...

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

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

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

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

Waiting list update

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

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

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

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

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

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

Being feeble

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

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

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

One week down

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

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

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

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

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

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

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

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

I'm back!

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

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

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

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

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

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

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

Yes, I am still alive

Oops, once again I've been outrageously inefficient. Well, make that lazy. In all honesty there's been very little to report in the medical world of dave weston, which is a damned fine thing. The itch comes and goes, the sleep is generally fine, most days are just not a problem at all. I'm learning to manage it. The biggest factor affecting everything is sleep - a few decent nights sleep in a row with not too much on in the day and it makes all the difference - much more so than anything I eat or drink.

Dancing is going really well. Leah and I get on like a house on fire (we're both intensely immature, and share lots of interests), and our competition results are beginning to look up. We're just looking at updating some of our choreography as our first efforts were a little dull/one-dimensional. That'll hopefully move things on a bit more.

My flat is great (leaky boiler issues aside). Tim has moved out of my spare room now, and I'm still lodgerless but vaguely looking to find someone who I'll get on with. On the work front I gave up teaching at Camden but I'm now doing 2 days a week back at Watford Boys, though this time its all IT/data work, rather than teaching. I'm still up in Oxford every week helping out there, and I'm working on making some websites for friends and family.

It does seem bizarre that its around 2 years since Mum died. It really doesn't feel like that long, in some ways, though in others it feels like a lifetime - can't really explain it. Surely the most significant thing in the time since has been the arrival of my wonderful nephew Patrick. I do try and see him at least once a fortnight and he's now crawling and I'm sure on the verge of talking. He's 13 months old now, which is hard to believe! I've started telling him how much he's grown. Sad.

I've been keeping up with information on the dreaded P.S.C. via an email support group I signed up to. There's some interesting new theories out there, and some new drugs coming through that look good. Still, the holy grail will be for someone to be able to do something clever with stem cells to grow healthy liver cells. I think that's probably at least 20 years off yet, but I'm happy to hold out while they figure it out!

I'm quite happy to have nothing to report. Long may it continue. I'm seeing O'Grady at the end of next month, and I'm sure it will be business as usual.

Hope you're all well!

New beginnings

Life is bloody good at the moment. Sure, there are still silly little irritations like my car playing up, and the itch is still hanging around like a bad smell, but on all other fronts things are looking up.
First and foremost I finally have a new dance partner, Leah. She's a 19 year old welsh girl currently studying Maths at Royal Holloway. She lives in Egham and has loads of time free most afternoons/evenings/weekends to dance, which is perfect. She's also got absolutely great technique. After just one week of dancing together we already have 4 of our 5 routines choreographed - we now just need to work out a Jive. We're planning on competing in just over 2 weeks time at the student national championships in the ex-student category, which should be a gentle introduction to competitions. I've got a great feeling about it all, and my dance obsession has cranked up another whole notch!
Secondly my love life has finally perked up a bit. Been on about 4 dates now and things are looking good, but no more on that for fear of jinxing it!
Lastly, and most intruigingly, I've just started going to see an Accupunturist. I didn't really know quite what to expect but had a vague idea he might be able to help with the itching. Actually its like a whole counselling/emotional workout as well as relieving vast amounts of pent-up frustration and tension that I seem to have been storing up inside me. I'm feeling so much better about life, and the visualisations and ideas that he is giving me, along with classic needle-based therapy, is absolutely fascinating. The most surprising aspect of it all is realising just how tense a person I have been for such a long time. You know the feeling you get of release after you have really let go and cried for a while? I've got that right now and its wonderful. Long may it last, and with a bit of luck it'll lead to improvement in some more physical symptoms.
Only 6 more weeks of teaching to go now until I give up for good. I'm really quite excited now. I don't know how committed I'm going to be feeling toward teaching in these last few weeks but I would like to go out with a bang rather than a whimper!
Haven't seen Dad & Carole for ages, and haven't seen my gorgeous nephew for far too long too. Life is suddenly so busy with an extra 12 or so hours of dancing a week (duh, surprise). Hope to remedy both of those very soon.
Here's to what is promising to be a very exciting 2007.

Partner-hunting

January was a fairly mixed month overall. I've been pleasantly busy with work and various social things - various celebrations of two engagements in my circle of ex-oxford dancer friends. Healthwise its been fairly good. Itching is annoying but still seemingly as liable to improve as get worse. Actually I've noticed a very strong correlation between itching and lack-of-sleep/stress. Even just a normal part-time week at work with one or two extra late nights and/or early mornings can make it noticably worse, so I'm taking even more extra care of myself.

Irritations this month include my stupid bloody car. I had the engine revamped at cost of nearly £400 to myself and now it sounds like the catalytic converter and other bits are buggered too - more money! The garage who are doing it are annoying me and taking ages to sort anything out. That's car garages for you though I think, so just lumping that one.

On the dance-partner side things were fairly quiet. I had a great tryout with an American girl who was moving over here to study, and I was all set to take it further, but one day after the tryout she heard her father had suffered a heart-attack and had to fly home to Boston. So unless I want to move to Boston, thats another option out. I've literally just sat down and emailed about 20 more girls so fingers crossed *something* will come of that.

Only about 8 weeks of school left now until Easter when I'm giving it up. Still a little hazy as to what I'll be doing at that point, but that will hopefully get clearer when I've finally found a dance partner. That's the number one priority at the moment (besides spending money fixing my car), so watch this space.

Happy New Year everyone. I've had a great time with family and friends over the holidays. First up was a few days with Dad and Carole in Watford. My brother and sister-in-law came with my gorgeous little nephew/godson, and my step-brother came too. We had a great time, ate too much, played silly games and enjoyed each other's company. I made a decision to keep alcohol intake to nearly zero but have to admit it really made no difference at all to my enjoyment.

Earlyish on Boxing day I had to drive back to Wimbledon to pick up my passport that I had forgotten to bring, then straight up to Stansted to rendez-vous with Charles and Kathy and baby Patrick to head over to Belfast to get the wee lad baptised. It was a nightmare journey - we nearly missed the plane - but Patrick was very well behaved thank God. Over in Belfast there was lots of Kathy's family around and it was all energetic and enjoyable. The baptism itself was simple and fairly short. I had to renounce Satan and his works - have to admit crossing my fingers: some of Satan's works are rather fun! Still, I'm now just-about-officially a Godparent to the boy. Poor lad, he cried through most of it - he wasn't getting religion without a battle!

After Belfast I recuperated at home in Wimbledon for a couple of days before heading off to Amsterdam on New Year's Eve. I stayed with my friend Sarah who has a flat there while she's working there for 6 months. There were lots of Oxford dancing friends there and we had a fantastic time. The Dutch are insane - they let off firecrackers in the street next to you and hold fireworks in their hands while they light them with cigarettes and proceed to point them all over the place. Scary but great atmosphere and midnight was fantastic.

A poignant part of New Years was that my poor friend Pete was putting a remarkably brave face on given his mum had dropped dead suddenly only a couple of weeks before - complications of cancer treatment. It really brought home just how much has happened since Mum died last year - I found it quite cathartic being able to talk to him about my experiences and asking him about his. I hope I was useful rather than just making it worse for him - very brave of him to come at all considering the funeral was on the 4th.

Finally, after a nightmareish 10-hour delay at Schipiol airport I got back home on the 2nd. I went over to Charles and Kathy's house to say hello and see Patrick for a bit. While I was there I managed to help them a video of patrick giggling like mad on to Patrick's blog. Its worth a visit to see the ultra-cuteness of my nephew, even though I'm biased as hell!

Happy New Year to you all. Keep your eyes peeled for more news about my plans for this year!