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.