School and the IB

I've always intended to make a post to explain a bit about school - what subjects I'm studying, what qualification I'm working towards... I really thought I'd made it, but after some questions following my last post about school, I checked back and realised I'd never actually written this post. So I'm writing it now in the hope that it'll make some of the school stuff I mention easier to understand :)

I'mn currently in year 13 (my second and final year of sixth form). Before I started sixth form I'd missed a lot of school due to being ill, so didn't know what career I wanted (and still don't, lol). Because of this I didn't want to narrow my options too much, so A Levels didn't appeal to me. Then a friend's mum mentioned the International Baccalaureate Diploma (IB), which sounded ideal. It is a 2 year qualification that is an alternative to A Levels. You take 7 subjects (including maths, a science, your native language, a foreign language, a humanities subject, Theory of Knowledge (which is like philosophy) and one more subject). So you don't specialise like you would if you took A Levels. And universities like the IB.

I really liked the sound of the IB so looked into which schools offered it. The nearest school to me was 22 miles away, but near to where my dad worked. I applied in summer 2007 and started there in September 2007. My dad takes me in on his way to work in the mornings and picks me up when he finishes in the evening. I've tried to do the journey on the buses occasionally, when I've finished school early, but it's 3 different buses and takes 2 hours!

When I started sixth form I decided to take the following subjects:

• English Literature
• Maths
• Biology
• Environmental Systems
• Psychology
• Japanese
  
• Theory of Knowledge

This was a lot of work, but I coped fine in year 12. However when I returned to school in September 2008 after my reversal operation in the summer I was feeling very tired and struggling to keep up with all the work. So in December 2008 I made the decision to drop down from the International Baccalaureate Diploma (all 7 subjects) to the International Baccalaureate Certificates (just some of the 7 subjects). The International Baccalaureate Certificates aren't accepted by top universities (like Oxbridge), but other universities are usually ok with it if you have a valid reason for not being able to complete the whole Diploma. I wasn't too worried as I wasn't sure if I wanted to go to university and I knew if I did I wouldn't be applying to Oxbridge. Also my head of sixth form said if I did apply to university then she would be happy to write a letter explaining why I was doing the certificates.

So from last December I dropped Theory of Knowledge and maths, leaving just 5 subjects:

• English Literature
• Biology
• Environmental Systems
• Psychology
• Japanese

I found this easier to manage, though it's still a lot of work!

At the moment lots of oral exams are occuring. I've just had my English individual oral commentary, but I've got Japanese orals over the next 3 weeks (2 group orals next week and then my indivdual oral a fortnight after that). The final coursework deadlines are also around at the moment.

My final exams will be in the first 3 weeks of May. I've not started revision yet, but know I really ought to very soon. The coursework and exams we do in the IB are not graded from A* to E like in A Levels. Instead all our work is graded on a scale from 7 to 1 (7 is the best grade and 1 is a fail) I'm predicted 6s in all my final exams :) If you do the full diploma then your final grades for your 7 subjects are added together and you can get up to 3 bonus points, giving you a total out of 45 for your diploma. Some of my friends who are applying to Oxbridge need 40 out of 45 points. But as I'm just doing certificates I will get a score out of 7 for each subject.

I'm sorry this post is so long, but I hope you find it interesting. If you've any questions please ask.

A busy week

I've now been back from Japan for almost a week. This week has been very busy though, with various school stresses, and of course I've been tired after Japan.

Today was the final deadline for my biology coursework, but I managed to get all of my experiment write ups in on time. I started working on them earlier in the week, with 3 to complete, and finished the final one this morning. All was looking good until I discovered yesterday that one set of results from an experiment were completely the wrong way round! I think I'd just written them down incorrectly though, so I fixed it, but had to redraw the graph. And as 2 of the 3 experiments I had to write up had been done back in September I struggled with the evaluations (what went wrong and how it could be improved) because I could barely remember doing the experiments! But I sorted it all out and handed them in this morning.

Today I also had my English Individual Oral Commentary, which was scary! I had to revise 3 texts (Wuthering Heights, 5 Sylvia Plath poems and an Orwell essay) as I didn't know which I'd be given in the exam. I was hoping for an extract from Wuthering Heights and that was what I got :) It was a good extract, but I was very nervous, so struggled to think of what to talk about. I had 20 mins to plan and then had to give a 10 - 12 min oral commentary on the extract. The exam room was boiling hot and there was a commotion going on outside, but I think I did ok. It was quite short though, so I got lots of questions at the end to take it up to 15 mins. The questions were ok though, until the final one. I was told that if I got an extract from Wuthering Heights it would be from the first 10 chapters, so as I didn't really like the book I just read the first 10 chapters, instead of the whole book like had been recommended. So the last question I was asked was about how a line in my extract foreshadowed an event towards the end of the novel (after the chapters I'd read)! I ummed and ahhed for a bit and then made a suggestion based on something I'd read in a synopsis of the novel. I think it was right, but I'm not sure. I'm now very relieved it's over. I should find out the result shortly - it was worth 15% of my final English grade!

I've still got some work to do over the weekend though as I have a Japanese group oral exam on Monday and another on Friday. On Monday I also have a Japanese test which I need to revise for and I need to write about my trip to Japan in Japanese for my homework.

But I'm planning to relax a bit this weekend too. I'm seeing my nan tomorrow, which I'm looking forward to as I've not seen her since I returned from Japan. It'll be nice to chat to her about it, show her my photos and give her a special present (a lovely silk fan) from Japan. And then on Sunday me and my dad are hoping to go swimming, which I'm really looking forward to. Before I became ill with liver disease I used to swim a lot and really enjoyed it. But I couldn't go when I was ill and then for a while after my transplant I found it too difficult with a stoma. Since my reversal last summer I've swum a couple of times, but found it too tiring. So I've not been for a while, but am looking forward to trying it again on Sunday.

This weekend I'm also planning to sort out my Japan photos. I've got them all on my external hard drive, but they seem to have come out of order, so I need to get them all organised. Then I need to go through the 700 photos to choose the best to put on here. And of course I need to work out how to post photos to my blog! Hopefully it'll be quite straightforward. So they should be up later this weekend or early next week.

I took the book 'Twilight' with me to Japan as I wanted to read it after hearing all the hype surrounding it. I didn't get much time to read in Japan, but read a bit on the flights. I very rarely give up on a book, but yesterday I gave up on 'Twilight'. I'd read over half of it, but wasn't really enjoying it and didn't want to pick it up and continue reading it. I don't think it's a bad book, but I don't think it deserves all the hype. I expected it to be excellent - and it wasn't. Today I started reading 'Middlesex' after Becky recommended it to me. I've not read much so far as I was very tired when I was trying to read it, but it sounds promising and I'll let you know what I think when I've read a bit more.

Great news :D

Before I went to Japan I worked with my dietician to increase my eating and decrease my overnight feeds. Just before I left for Japan I was on 3 nights of overnight enteral feeds per week and my weight was 49.6kg (my ideal weight is 50kg or above). So while I was in Japan for 10 days I had no overnight feeds at all (which was the first time since I was 6 months old!). I emailed my dietician from hospital B this morning after weighing myself. My weight had dropped by 1.5kg to 48.1kg in 2 weeks. So I asked her what I should do. I've just received a reply.

My dietician said that that she was really impressed with how well I was coping without the feeds and that my weight loss wasn't too bad at all. So I can continue without feeds for 2 more weeks and then review it and my weight in a fortnight :D And if my weight has dropped more in a fortnight then my dietician would like me to try oral supplement drinks instead of overnight feeds if I need to regain some weight. So that's fantastic news as it looks like I'm now really close to being off overnight feeds for good. I've just got to keep up my eating and drinking :)

My Japan photos are almost sorted out now, so I should be able to post some up shortly. And I'm also planning to tell you more about the trip.
However I'm a bit stressed with school work at the moment as all my biology coursework has to be completed by Friday and on Friday I also have my actual English IOC, which I'm quite nervous about. Then next week I have two Japanese group orals and then our individual orals are the following week. And final exams are only 9 weeks away!

I'm home

I got home about midnight last night. I had a fantastic time in Japan with no medical problems at all, in fact everything went really smoothly :D I'll make a few longer posts soon to tell you all about it, but I'll leave that til another day as I'm really tired today. I took about 900 photos in Japan and hope to be able to post some of them up here, but that will depend on whether I can get my laptop working or not (fingers crossed).

Japan!!!

I'm soooo excited, Japan is fast approaching! :D

We meet at school at 3.30am in the morning, which means I'll have to get up 2am - 2.30am! I'm going to try to get some sleep tonight, but then hopefully I'll catch up with my sleep on the long plane journey tomorrow. From school we're getting the minibus to Heathrow and then our first plane leaves at 7.45am. It's an hour and a quarter flight to Paris, where we then have a 3 and a half hour wait for our next plane. Then it's 12 and a half hours to Osaka, followed by a 2 hour coach ride to Kyoto. Phew!

We've got a packed itinery, including:

• visiting cultural Japanese sights - such as temples, shrines and castles
• trying traditional Japanese crafts - sweet making, paper making and flower arranging
• eating out
• participating in Japanese activities - such as karaoke, meditation and a tea ceremony
• exploring the city of Kyoto
• and of course shopping!

Today I've been packing. However I'm not good with spatial problems, like trying to fit everything into a bag, so I've just piled everything I want to take on my bed and when my dad gets back from work he's going to attempt to fit everything in my bag! I've still got to decide what will go in my hand luggage and what will go in my main bag.
And I've just discovered that a travel alarm clock I bought doesn't work, grr.

I've got lots of things to keep me busy on the long flights:

• 3 books of my choice - I finally decided on Middlesex, The Da Vinci Code and Twilight
• 1 book I have to read for school - Wuthering Heights
• 2 magazines - Writing Magazine and Focus
• My iPod - containing loads of music and some Wallace and Gromit episodes
• My Nintendo DS - I'm taking 6 games, including 2 new ones
  
• Some school work - preparation for my actual IOC which will be after half term
• A pack of playing cards - to play a fun card game called Slam with Catherine and/or Abi

And of course there'll be films to watch on the plane too. I think that'll stop me from getting bored!

Today I've also backed up my laptop, as my external hard drive arrived this morning. I feel more reassured now I've got all my music, photos and school work backed up. And then I've also found a bit of time to relax today :)

My mum said I could choose the meal for tonight as I'm going to Japan tomorrow, so I chose my favourite - Chinese Crispy Duck - yum! It's in the oven now, so should be ready soon :) Then after tea I'll probably have a shower and then try to get an early night.

I'm going to keep a diary and take lots of photos, so I'll post some up here when I return. I'll be away til the 21st/22nd of February, but I'll post as soon as I'm over my jet-lag.

Will

While I've been in hospital I've been lucky enough to meet some incredible children. Today should be Will's 16th birthday, but he died in May 2007. This post is in his memory.

The very first time I went to hospital B was for a meeting with the consultant (Dr G) in Summer 2006 about whether I was suitable for a transplant assessment. I was very upset during the meeting at the uncertainty of my future. Then me and my parents were shown round the ward. I was used to the noise and bustle of hospital G, and the ward at hospital B seemed a complete contrast. The ward appeared deserted, as all the patients were in their cubicles (or maybe off the ward), there were no children to be seen! The only staff were 2 nurses, who I thought looked very formidable. I hated it, and I couldn't imagine being a patient there. Then the entrance doors to the ward flew open and a boy who looked about the same age as my brother (13 ish), ran down the ward and gave one of the nurses a huge hug. He was clearly very comfortable on the ward and with the nurses, so that was when I realised that maybe it wouldn't be so bad after all. That was my first meeting with Will.

Will wasn't on the ward when I was in for my transplant assessment, but he was in for the majority of my actual transplant stay. Will was 13, the same age as my brother. He'd had a transplant like mine (small bowel and liver) a few years ago, but his transplant was failing and he had to go back onto TPN. Me and Will were both quite shy, so we didn't talk much, but me and my parents got friendly with his family, especially his mum, and Alf got friendly with Wills' younger brother. So I learnt a lot about Will through seeing him around the ward for so long and also through talking to his family and the nurses who all knew him very well.

Will loved football and was an avid supporter of Manchester United. He had their colours and posters all around his room and in his cubicle window. Will loved cars and couldn't wait to learn to drive. He also enjoyed riding his bike, playing on his games consoles and spending time with his family and his dogs.

Will was always smiling and making everyone laugh, even when he was ill. He was so brave and so determined, and was (and still is) a real inspiration to me.

Will spent Christmas 2006 in hospital, like me, and also his 14th birthday in February 2007. He managed to escape to a local zoo for the day with his family, and when he came back it was clear he'd had an amazing time and he was full of tales to tell us all.

The day after his 14th birthday Will was relisted for a transplant as his original transplant had failed. Shortly after I was discharged Will was discharged to his local hospital, but soon he got the 'call' and had his second transplant. I kept in touch with Will by writing to him in hospital. Will was soon feeling a lot better and very soon after his transplant he rode his bike round a local park. However something was clearly wrong as Will was very jaundiced. When I returned for a clinic we saw him and his mum on the ward.

Just a few weeks later the ward phoned us and we learnt Will was very, very ill. He had serious rejection and his organs were failing. A few days later, on May 28th we heard Will had died, he was just 14.

Will was such an inspiration to me and many other people. As Will liked to say, "Where there's a Will, there's a way."

A couple of weeks later I attended Will's burial. It was perfect. RIP Will xxxxxxxxxx

Shopping, school and Japan

This morning I had 2 free periods first, so was dropped off in town so I could do some last minute shopping for Japan before getting the bus into school. I finally tracked down a copy of Middlesex, which I'm looking forward to reading on the plane. Thanks Becky for the recommendation :) I also bought a pocket Japanese dictionary (as the one I use is much too heavy to take to Japan) and Lily Allen's new album. I tried to buy an external hard drive, but the shop only had a 1 or 1.5 terabyte size in stock, which would have cost £100+! So I've ordered one from them instead, which only cost £30. The delivery is free and it should come in the post tomorrow or Wednesday, so I can back up my laptop before I go to Japan.

I then went back to school for my mock IOC. I got a nice extract from Wuthering Heights (one that made sense to me :p) and had 20 mins preparation time. Then I gave my oral commentary to Mrs K, aiming for 7 - 12 mins long. It was only 5 mins, which I was told would mean a fail if it was the actual exam! But Mrs K said what I had was great, but I needed to go into more detail and look at the language more closely. Then she asked me some guiding questions (more helpful than I'll be allowed in the exam), and we unpicked the text together. So I'm feeling more confident about the actual exam now, as I know more about what is expected of me. The actual IOC will be on Friday 27th February, so I can (maybe) do some more preparation on the long flights to and from Japan, and definitely in the week after half term.

I also spoke to my biology teacher/form tutor - Mrs C. I spoke to her about my concerns about the biology cwk and she told me that the final deadline isn't til Friday 27th and I only need to write up 3 of the 5 experiments. So that doesn't seem as impossible now.

I can't believe that it's only 2 days and 12 hours til Japan!! My friend Catherine was telling me today about how she'd finished her packing last night - I've not even started mine yet, though I do have a list of what I'm going to take. Tomorrow I've only got lessons in periods 1 and 2, so my mum will pick me up at about 11.30am, so I should be able to make a start on my packing tomorrow afternoon. Then I'm not going to school on Wednesday either, so I should be able to finish packing then and get an early night for the early start needed on Thursday.

Laptop trouble

My laptop is 4 years old now, but apart from getting a bit slower it's been doing fine - until now. Over the last few days it's been really, really slow. It's now got to the point where it's taking 20 to 30mins to start up, which is just ridiculous. Then once it's turned on, it is really really slow to do anything. Last night I ran a virus check overnight, as I thought it might be a virus. But the scan didn't find anything. So I don't know what the problem is, which is very frustrating. I'm writing this from the family computer as I just haven't got the patience for mine at the mo. Tomorrow morning I'm going into town (to try to find a copy of Middlesex and to buy Lily Allen's new album), as I don't start lessons til 11.20am. So I'm going to pick up an external hard drive too, so I can back up my laptop and then completely wipe it to see if that solves the problem. If that doesn't work I don't know what else I could try.

This morning I babysat for H again, and it was great - we just played on the Wii together for 3 and a half hours, and I got paid for it! :D This afternoon I was going to go to the cinema, but decided against it as I seem to have a lot to do. I've been getting a bit more organised for Japan, as we go in less than 4 days! I can't believe how quickly it's approaching. And I also need to do some school work that I keep putting off. I've got my mock IOC tomorrow, so I want to do a bit more preparation for that now that my York Notes study guide has arrived. And I was planning to have completed 5 biology experiment write ups for Tuesday (my last day at school before Japan). But 2 are half done and I've not even started 3 of them yet, so I need to speak to my teacher to find out when they actually have to be completed and handed in by, as Tuesday's not looking very realistic. I think it might actually be just after half term, but I don't want to have to work on them in Japan.

A clear desk at last!

I've been tidying my desk a bit more this afternoon and my desk is finally clear enough to fit my laptop on! My laptop has been living on the dining room table for ages as my desk has always been full of clutter. But it'll be nice now to be able to take it up into my room to work on homework without the distractions of downstairs. After shuffling my furniture round yesterday I can now get a chair up to my desk too, as before I had a sofa in front of it, lol.

I've also been having a nice time with my nan this afternoon and together we've been getting very excited about Japan :D

My mum heard from hospital B yesterday regarding the last set of bloods I had done. The results had been faxed to them and my results were all fine. So that's a relief to know that before I go to Japan.

Snow and Japan preparations

I loved the snow when it first appeared on Monday, but now the novelty has worn off and I'm fed up of it disrupting plans. Yesterday I only had lessons in the first 3 periods, so the plan was for mum to come and collect me at 12.30pm. But as I got to school the snow was falling heavily and it kept up for a while. My first 3 lessons were ok and I got the final piece of my Environmental Systems coursework completed, despite being a bit distracted by the snow. But then I heard from mum that the snow was too bad for her to come and collect me, so I'd have to wait for dad to finish work. I expected this to be around 4 or 5pm, but he finished at 3pm. So I only had to waste 2 and a half hours at school, which wasn't too bad. Then yesterday evening my friend Claire was going to come round, but she couldn't get here because of the snow :( So I felt quite fed up for a bit yesterday evening, but then I rearranged all my furniture and started to tidy my room which made me feel a bit better.

My preparations for Japan are going really well - I can't believe it's only 5 days til I go! I'm an avid reader, so over the last month or two I've gathered together 9 books I've been recommended or have meant to read. I only want to take 3 or 4 to Japan, so on Thursday evening I read the first chapters of 8 of the books. I expected I'd only like a few of them, so then they'd be the ones I'd take to Japan. But I liked all of them! I've managed to narrow them down to about 5, but still have to decide which ones to take. One of the books I thought might be good to take with me is Middlesex, by Jeffrey Eugenides. Becky recommended another book by him, called The Virgin Suicides, which I read and really enjoyed. I ordered Middlesex from the library a couple of weeks ago, but it's not come yet, and I'm off to Japan on Thursday. So I'm not sure whether to buy a copy or wait to read it when I return from Japan.

My universal adaptor arrived in the post this morning as well as a parcel from my friend Lizzy with some travel bits for me to take to Japan - a journal, a small hairbrush, some small travel bottles to take toiletries in, and some shower caps! And 2 of the monthly magazines I subscribe too (Focus and Writing Magazine) came in the post this morning, so I'm going to save them to read on the plane.

This morning I went to the village Post Office to enquire about buying some Yen (for spending money in Japan), but they would have to send off for it and they and so couldn't guarantee it for Thursday. Then I went into my local town where I enquired at the Post Office there, only to encounter the same problem. They suggested I try the travel agents and luckily they had some Yen in stock. The exchange rate at the moment is just under 130 Yen to the Pound, so I bought 30,000 Yen for about £230, so I've got plenty of spending money. My nan gave me £40 of that, so I'm very grateful to her. And while I was in town I also visted the opticians as my glasses weren't comfortable, but they're much better now.

On the way back from town we picked my nan up and she's come round for the afternoon :) Then tomorrow morning I'm babysitting (well, for a 10 year old) from 9am til 12.30pm and then in the afternoon I'm hoping to go to the cinema with my mum to see Doubt (Meryl Streep's latest film). Around those plans I've also got to complete 5 biology experiment write-ups by Tuesday and do some more preparation for my mock English IOC on Monday. I'm feeling a bit more confident about the mock IOC now though and my York Notes guide to Wuthering Heights arrived in the post this morning.

Then on Monday I've got a full day at school, including my mock English IOC in the morning. Tuesday I've only got lessons in the first 2 periods, so I should be able to be picked up mid morning. And then Wednesday I've got the day off so I'll have plenty of time to pack and do last minute organising and hopefully I'll not be too tired for going on Thursday. I'm not so worried about the snow disrupting flights now as it looks like we've seen the last of the snow - at last!

Concentration, Japan and proper snow!

Yesterday I returned to school. I wasn't too tired, which was good, but I really struggled with my concentration. I couldn't concentrate on anything yesterday - lessons, assemblies, meetings, homework, TV... Very frustrating. I've never noticed problems with my concentration before so I'll just see how it goes.

At school yesterday I had a brief meeting with Mrs M and it seems like everything is sorted for Japan! :D Insurance is all sorted at last, phew. All the relevant letters have been written which should hopefully get my medications and sterile water through customs. My consultant (from hospital B) has written a letter detailing why I need those things through customs and also outlining my medical conditions just in case I need any medical treatment while I'm over there. I'm going to take that with me and a copy has also been translated into Japanese by Miss I. So it's all looking good. I can't believe it's just one week til I fly. I'm very excited, but a bit apprehensive too. My travel towels that I ordered from Amazon at the weekend arrived yesterday and they're great. I've bought 2 (1 for my hands and face and 1 for showering) and they're very compact and light. At the weekend I also ordered myself a new game for my Nintendo DS (to play on the flights) and that arrived yesterday too. And I'm waiting for delivery of a travel adaptor.

I woke up this morning to proper snow :D We had a little on Monday, but I couldn't believe it today. And it's been snowing on and off all morning too. So we've got another snow day! I'm quite relieved as I should have been doing my mock English IOC this afternoon, but I didn't feel prepared for it. So now it's likely that it'll be rescheduled to sometime next week instead, so I'll have the weekend to prepare. I bought a study guide online at the weekend to help me, so hopefully that'll arrive in the post tomorrow or Saturday. Thanks very much for the Sparknotes link Becky, I was reading the info on there yesterday and some of it was really useful.

I've been looking at the local weather forecast and lots of sleet and a bit of snow is predicted for the next 5 days. It'd be nice to have some more snow days, but I'm a bit apprehensive as I don't want there to be any problems with our flights next Thursday.

Medical history part 4 (post transplant)

In the last 2 years since my transplant my health has been great (minus the current hiccup with my energy levels) :D

My medications have reduced from 14 different medications to just 6 and I was taking over 80 tablets a day, but now I'm just taking 9! I came home from hospital on specially made enteral feeds overnight every night plus 3 bolus feeds a day. Now I have standard enteral feeds just 3 nights per week! I was hardly eating anything immediately after transplant, now my eating is heading towards 'normal'! As I said in my my previous post I appear to be in the tiny proportion of transplant patients who don't get rejection in the first 2 years (fingers crossed). I had my illeostomy reversed in July 2008 (at 20 months post transplant), which was great as it now means I can eat when I want, wear what I want and it has given me a lot more confidence. After my transplant while I couldn't mix with lots of people I continued to have home tutoring and then sat and passed 4 GCSEs at home. I already had 2 GCSEs, so 9 months after my transplant I returned to sixth form (full time), without having to repeat a year. Most of my friends at school have no idea I've had a transplant! In March 2008 (16 months post transplant) I was well enough to go on holiday with my family to Florida, which was granted for me by the Make-A-Wish foundation. And now in less than 2 weeks I'm going on a school trip to Japan, without my parents!

I know a little about my donor. She was called Ellie and she died aged 19 from a brain haemorrhage. Her sister wrote me a card just 3 months after my transplant and since then we've been in contact via email. I'll always be grateful to Ellie and her brave family for giving me this gift of life. I just can't express my thanks enough, as I know without my transplant I wouldn't be here now.

Travel insurance and Wuthering Heights

I've not been to school today as I agreed last week with Mrs K (deputy head of sixth form) that it would be best if I only did 4 days a week til half term and then we can have a rethink after that. I'm still feeling very tired and so am a bit concerned about how I'll manage in Japan.

So this morning I got a phone call from J (sixth form secretary) asking if I was in school as Mrs M (head of sixth form and leader of Japan trip) needed to see me urgently. I said I wasn't in school and so she said Mrs M would phone me instead. I assumed it would be something to do with the Japan trip. So Mrs M rang and explained that the school couldn't organise insurance for me, so I'd have to sort it out myself. We fly in just over a week so I knew I'd got to get it sorted ASAP. So I left a message on the forum of TransplantKids and decided I'd ring the liver team at hospital B later to ask about who'd insure me (as I knew very few companies will insure small bowel transplant patients).

Later this afternoon school rang again and Mrs M said that the school had sorted my insurance so I didn't need to worry about it! I'm going to find out more when I'm back in school tomorrow as I'm still a bit concerned.

We're also having trouble trying to organise getting my sterile water (as I can't drink normal tap or bottled water) and tablets through customs. It looks like we have to warn them in advance, but we can't find the right contact numbers on the websites. It's getting very frustrating, but I don't want to just leave it til we get to the airport just in case there's a problem with it. Although I do have a letter from my consultant at hospital B explaining what I need to take on the plane with me and why.

Today I spent most of the day relaxing as I felt tired, but also tried to do some work for English. After half term we have individual oral commentaries (IOCs), which count towards our final grades. I'm quite nervous about this as I don't feel comfortable with any of the 4 texts yet, but hopefully I'll take get a chance to revise them over half term in Japan. I've got a mock IOC on Thursday, for which I've been allowed to choose the text (although in the real IOC I won't have a choice - it'll be random). I chose Wuthering Heights through a process of elimination (I can't understand the language in Hamlet, Sylvia Plath's poerty makes no sense at all to me and we've not studied the Orwell Essays yet!). On Thursday I'll be given an extract from the first 8 chapters of Wuthering Heights and then after 20mins preparation I'll have to give a 12min spoken commentary on that extract. I've currently read the first 6 chapters of Wuthering Heights (so just 2 more to go), but don't really understand them. Luckily my friend Claire is an English teacher, so she's emailed me some plot summaries which have helped a bit. I read a lot, but I much prefer modern, contempary novels than classics.

Final part of my medical history will be up tomorrow.

Medical history part 3 (transplant)

We left the clinic prepared for a long wait, but just a couple of days later I received the call. It was a Saturday evening and I'd gone to bed early because I was so tired, but my parents and Alfie were still up. Chris was called and he came home to look after Alf while we were away. Because we'd already got our bags packed we were soon ready to go. Before we left my mum put a red sheet of card up in her window. This was a prearranged code to let anyone passing know that I'd been called. I was terrified as we set off to drive to the hospital.

I can't remember much of the car journey or my arrival at the hospital, but I clearly remember going down to theatre at about 8am on the morning of Sunday 19th November. The anaesthetist asked if I'd like some music playing, so I went off to sleep to 'Snow' by the Red Hot Chili Peppers.

My memories are patchy during the period I spent in hospital (due to Morphine and lots of other medications I was on, as well as the fact I was very ill for a while) but I can remember some things and my mum kept a diary for me. I was in theatre for 12 hours and then in ICU for 5 days. I was in hospital for 11 weeks in total, and had various complications meaning I had to return to theatre more than 10 times. I had pancreatitis, an infection in my wound, kinks in my new bowel, adhesions... After a small bowel transplant the aim is to reduce the TPN feeds and build up the replacement (NG) enteral feeds, until the TPN can be stopped. I had trouble straight away tolerating the enteral feeds into my stomach, so from TPN I was weaned to NJ (naso jejunal) feeds and then to NG (naso gastric) feeds, which took a while. I had my first night off TPN on January 1st 2007! There were also complications with my fluid balance resulting in me being overloaded with fluid and I had horrible pressure sores from being in bed for so long. And my sleep pattern was messed up, so for many weeks I was having just an hour or two of sleep in 24 hours, making everything seem a lot worse.

Eventually things started going more smoothly and there was a discharge meeting held to arrange getting me home. Before I left hospital I had a final operation to remove my central line, as I was off TPN so didn't need it any more, and it would be an infection risk if it was left in. By this point I'd had loads of operations, but for some reason this time I reacted to the anaesthetic and for a few days I had an awful headache. This was a concern as meningitis was suspected, but the lumbar puncture and all the bloods came back clear, so a reaction to the anaesthetic was assumed. Eventually I was discharged after 11 weeks!

Although I've mentioned many difficulties surrounding my transplant, I did have some good times while in hospital too. I remember one day how I discovered that if a syringe was filled with air and then a cap was attached to the end, you could make the cap shoot through the air by pushing the syringe plunger. I tried this out on the nurses and soon I had 3 nurses creeping under my cubicle window and firing syringe caps at me round the door. I was firing back. That was great fun :D I also met some great people during my stay.

The first few weeks after my transplant I'd been in isolation, having to stay in a cubicle all the time, then I was allowed around the ward and eventually I escaped the hospital and went into the city. However due to the high immuno-suppressant drugs I was on (to stop my body rejecting my new organs), I had to avoid crowds for 6 months. There were also all the new medications to get used to (when I came home I was taking 14 different medications and over 80 tablets a day), my enteral feed had to be specially made up every night and I had an illeostomy. An illeostomy was formed when I had a transplant so my new bowel could be carefully monitored, but I just found it frustrating.

One week after discharge I returned to hospital B for an outpatient appointment. I had bloods taken and it was found my liver function tests (LFTs) had risen, so I was readmitted for observation. I had known this was a possibility, so had packed an overnight bag to take to the clinic just in case, but had actually left it at home. So I was totally unprepared. My dad stayed in with me and my mum returned home. She planned to come back the next day with my stuff, but the next day we woke up to very heavy snow (yes, in England in February!), so my mum couldn't get back. But a lovely parent on the ward lent me some night clothes etc, and we bought the essentials. My LFTs were monitored, but it didn't look like I had rejection, so a week later I returned home for good!

For a while after my transplant I had to return for outpatient appointments and inpatient stays (for endoscopies) regularly to monitor me for signs of rejection. I was told that 90% of patients have some degree of reaction in the first 6 months and 98% in the first two years post transplant. But luckily, I've had no rejection at all (and at the time of writing I'm 2 years and 2 months post transplant).

Medical history part 2 (liver disease)

In summer 2005 I was in the school playground as the fire alarm had gone off, and some boys in my class started teasing me for being 'green'. I didn't think much of it at the time. In November I'd been out with my family to celebrate bonfire night and just after we got home I had a nosebleed. I'd always suffered from nosebleeds, but this one was different. It was really heavy and wouldn't stop. I ended up in hospital that night. That winter I had many more profuse nosebleeds, began to look jaundiced and became very lethargic. In January 2006 I was so lethargic I stopped going to school. I had home tutoring when I felt well enough.

I was admitted to hospital G for tests as it had been long suspected I had gall stones (a common side effect of TPN). However the tests showed that my jaundice and lethargy weren't caused by gall stones, but were more likely to be related to my liver. I had a liver biopsy and was then referred to hospital K (a liver specialist) for more tests to find out what the problem was with my liver and why. Tests there found that my liver was very damaged, but the tests for various liver diseases all came back negative. So it was concluded that I had TPN related liver disease. TPN often causes liver disease, but it usually occurs after someone has been on TPN for a year or two (so mostly in babies in toddlers), so everyone was very surprised that TPN had suddenly caused my liver to fail after 14/15 years on TPN.

From there I was referred to hospital B, who are the specialist hospital in the UK for liver and small bowel transplants in children. There I was told that my liver was damaged beyond repair and so it looked like I needed a transplant. I was admitted for a two week transplant assessment in September 2006 where it was found I would be suitable for a transplant, and in fact it would be my only chance. The transplant they suggested was liver (because my liver was damaged), small bowel (so I would be able to eat or be enterally fed and could come off TPN, meaning the same TPN liver disease wouldn't occur again) and pancreas (because it's part of the transplant package!). When I was in hospital B my 16th birthday was fast approaching and I had to be under 16 to be put on their transplant list. There is an adult small bowel transplant unit in the UK (hospital A), but the children's hospitals got priority on the organs, so my chances of receiving a transplant in time would be much better at hospital B. I was put on the transplant list at hospital B the day before my 16th birthday. After my transplant I discovered that if I'd been listed under hospital A (the adult services) I wouldn't have received a transplant in time.

I went home to wait for the phone call. I was very ill (lethargic, jaundiced and still suffering from profuse nosebleeds) so we were all hoping the call soon came. We had our bags packed ready and for a while every time the phone rang we jumped. After I'd been on the transplant list for about seven and a half weeks, I returned to hospital B for an outpatient appointment. The doctors were worried about my health and said soon they'd have to consider admitting me as an inpatient. They also explained that there was currently a national shortage of donors, so I could be waiting for a while longer.

Slumdog Millionaire, Japan preparations and Snow Day!!

Yesterday afternoon me and my dad went to the cinema to see Slumdog Millionaire. It had been advertised as a feel good film, but it definitely wasn't. The majority of it was very sad and depressing as it told of the main character growing up in the slums of India. Some of it I struggled to watch. It did have a happy ending, but I wouldn't call it a feel good film. However, it was extremely well made.

Yesterday I also carried on with my preparations for Japan - just 10 days to go!! We'd been told that the accommodation where we will be staying doesn't provide towels, so yesterday I bought myself 2 travel towels off the Internet. I also ordered myself a new DS game (to play on the flights), and swapped an old DS game I was bored of with one my brother had completed. So we both got a new game for free :)

And today school has been cancelled because of the snow! :D The snow here looks quite pathetic, but my friend says it's heavier at school. And more is expected later. I'm surprised school is closed though, but I'm not complaining! Going to spend today relaxing and trying to catch up with some coursework. Last week I also arranged to have tomorrow off school, so I'll have a nice break with two days off together. Alf has the day off today too, as his school is also closed. My dad has gone to work though and my older brother Chris starts his new job today too (he's the manager of a bistro).

Medical history part 1 (TPN)

Here is a summary of my medical history as promised. Hopefully this will make it easier for you to understand the other posts as you will know the context of odd bits I say :) This is part 1. Parts 2 to 4 will be coming daily.

My medical problems started when I was 6 months old and was suddenly rushed to my local hospital (hospital H) very ill. It was discovered that the majority of my small intestines has telescoped in on themselves and died due to restricted blood supply. I was too ill to be transferred to a specialist hospital, so at hospital H (a general hospital) I had several operations to remove the affected bowel, as each day more of it died. After the surgery I was left with just 30cm of small intestine. As a result I was unable to absorb the nutrients I needed, so was transferred to hospital G (a specialist hospital) where I was put onto intravenous feeding (known as TPN - total parental nutrition) administered through a central line going directly into my heart. This way my body got all the nutrients it needed directly into my blood, so I didn't eat anything orally.

My health was fine on TPN until I was two and a half when I rushed into hospital G with a high temperature. It was discovered that blood had clotted on the end of my central line and the clots had come off the line and got into my heart and lungs, where one had cut off the blood supply to one of my lungs. I had emergency open heart surgery to remove the blood clots and then was put onto a blood thinning drug called Warfarin to prevent clots forming again.

When I was 8 I stayed in hospital for a while where I had a jejunal tube fitted with the hope of trying to enteral feed me directly into my limited small intestine. If this was successful then the hope was that my TPN would be able to be reduced, but my bowel wouldn't tolerate any enteral feeding at all.

As I grew older I adapted to life on TPN as it was all I had ever known. My TPN ran overnight every night, so I attended school full time in the day. My health was stable and I only had to miss school occasionally for hospital appointments. Everything went well and in most respects my life was 'normal' until summer 2005.

Another disappointing film about organ donation

As I mentioned in a previous blog post, I went to see 'Seven Pounds' at the cinema last weekend, but didn't think it was very well put together. On a transplant message board I use someone recommended I watch '21 grams' as they thought it was a much better film about organ donation. So I borrowed '21 grams' from the library and watched it last night. After watching about half of it I was very impressed and was struggling to fault it. However the second half was a complete contrast and very disappointing: it was really dramatic and I'd liken it to something from a soap! In the second half I found out that someone was having an affair, someone was pregnant and taking drugs, there was a plot to kill someone and then someone tried to commit suicide! I got quite frustrated with it as it had looked so promising from the first half.

I wonder if there have been any well made films about organ donation, as the 2 I've seen were both very disappointing and I wouldn't recommend either of them.