Not feeling well, bloods, cinema and shopping

Sorry for leaving it so long between updates, this might be a bit long! :P Despite making an effort to do less than usual this week, I felt really exhausted from last Mon evening til the weekend. I think that's partly because my nocturnalism has been quite extreme this week though. And I gave myself a Wiinjury from a Wii Sports Resort session late at night on Wed when I was feeling very nocturnal. I think that going from doing very little activity to doing an hour of swordplay and bowling wasn't sensible! My arm was so sore for the next 2 days. My tummy has also been worse than usual this week and I've had odd headaches too including a bad one on Sun. Because I've felt quite rough this week I had to cancel some plans which was frustrating. On Thur aft I was planning to go shopping in town, but didn't manage that as I was too tired. And an old friend (Sarah B) was supposed to pop round last Tue evening, but I wasn't feeling up to it. We rescheduled to Thur but I had to cancel that too. That evening I was just really fed up with everything and having to cancel yet more plans, but that didn't last for long and I was almost back to my normal cheerful and optimistic self the next day. Surprisingly after my most nocturnal night yet on Fri (got to sleep about 4am), I felt really good on Sat. I did crash with exhaustion that evening though. Sun and yesterday I didn't feel too tired at all :)

I often feel very cold, even when the heating is on and I'm sitting next to the radiator! Mum and dad always turn the heating off when they go to bed, which is sometimes 3 hours before I go to bed, so then the house gets quite chilly. They've said that they can't heat the house just for me, but I'm going to ask if I can have a heater in my bedroom.

My weight was up again to 51.4kg last Tue so I emailed my dietician to ask her what the plan was now as the previous week she'd said we'd review it then. I also asked if she'd managed to look at my food and symptom diary yet as I really want some help with my tummy pains. I also need to chase my Hosp B consultant up to ask more about the scope results because I know they found some inflammation that might explain the pains I'm getting. My dietician hasn't replied yet, but I found out from someone else that she was away at a conference last week, so hopefully she'll get in touch with me soon now she's back in the office. My weight this morn was 51.6kg :)

I'm struggling with lying down at the moment because it's really uncomfortable in my abdomen when I do. When I saw my consultant from Hosp A in July he told me that he thinks its something called an incisional hernia which has developed from one of my old operation scars, but I'm going to ask for a second opinion when I'm next at Hosp B. If it is an incisional hernia then I might need an operation to fix it, but I really don't want yet another operation. It's fine when I'm sitting or standing, but I often struggle to get comfortable when I lie down to sleep.

When I go out for a walk round to the local shop or surgery I think I must have started walking slightly faster (but not particularly fast) because I'm cold and want to get out of the cold. And annoyingly when I get to my destination I am often out of breath.

Last Sun I found out that Holly C has got a photography exhibition up in London at the moment. Last year she photographed kidney transplant recipients and their living donors, so it's those photos that are on display. If you're going to be in London in the next fortnight please pop in and have a look, you can find out more here. I'm hoping I'll be able to get there.

Last Mon morn me and mum attemped to take some blood via a fingerprick to post off to Hosp B so they could test my Tac level. But I just wouldn't bleed and we gave up after 3 fingerpricks because we hadn't even got a quarter of the amount of blood we needed! I phoned up Liver Direct then to request some more Tac kits for my next attempt as I thought we'd run out. Luckily though I found some we'd got, which is good as Hosp B haven't sent me the ones they said they would yet! Mum was out at work last Tue morn, but we attempted to take my Tac blood again on Wed morn and luckily that was successful and I posted it off that aft.

Last Mon I went to Hosp H to have the rest of my bloods taken. The phlebotomist there was the one who has passed me over to the more experienced phlebotomist before when she's seen me before, but she was there alone last Mon, so had to take my blood. I stopped bleeding part way through, but hopefully she got enough blood. I'll chase my Tac blood and my other blood results up this week.

That aft I went into town to meet with someone from Pathways to Work to help me produce a CV. I'd already drafted my CV so thought the appt wouldn't take long. But although the man I saw was very helpful and had loads of new ideas for my CV, he was also quite nattery, so the appt took 2.5 hours! Phew! I'm happy with my finished CV though, but I was very tired after that! When I came out of that appt and met up with mum she told me that Alf had got a lift home from college early rather than waiting for the bus, so was at home, but locked out! So we rushed home to let him.

And last Mon I also went round to the local post office to post off a letter to Mawite (Lizzy's husband's niece) who lives in Burma/Myanmar and started to write up my transplant story to be published on the Transplant Kids website. It's ended up quite long though, so I need to cut it down before it's ready to be published.

Last Tue I heard that someone I know (but not closely) from AYME has been quite ill in hospital recently. So I wrote her a card and posted it off. Hopefully it'll have cheered her up. I didn't do much else that day because I was very tired after the day before.

Last Wed I did some odd bits and pieces such as helping mum clear some shelves in the dining room. I also remembered that I have 3 spare standing tickets for the Mika concert at the end of the month that I need to sell, so I advertised them on Facebook and Twitter. No-one has shown any interest in them though, so I think I'm going to put them up on eBay sometime this week. If you are interested or know someone who might be interested then please let me know.

That evening me and mum went to the cinema with Claire. We got stuck in the rush hour traffic on the way there though so were late, but luckily we didn't miss any of the film, just some of the trailers. We tried to get all 3 of us in for the price of one (because of Claire's Orange Wed offer and my CEA cinema card) and managed it, but I don't think we'd get away with it again, lol. The film we saw was It's Complicated, Meryl Streep's latest film. Some of it was very funny, but some parts were a bit slow for me. I did enjoy it though. Afterwards Claire came back to our house for a little while, so I came home in her car rather than with mum. Claire decided to take a different route to beat mum home, but despite mum getting lost, we still failed spectacularly! Claire blamed the level crossing but even if that had been open, I'm sure mum would still have got home first, lol.

And it was that night I played on Wii Sports Resort after midnight! Hehe :P

On Thur morn I received a letter from my dieitician about the British Transplant Games 2010. I'm not going to go though. And I also received some Scoubidou strings from someone on AYME so I might have a play with them sometime if I can find some easy to follow instructions on the Internet. On the AYME forums there is a thread where people share photos of their bedrooms and I'd been meaning to contribute for ages so finally got round to taking some photos of my bedroom on Thur and sharing them on the forum. I hope to make a blog post with them soon :)

Mum went into town on Thur to meet up with someone for lunch, so I decided to make myself some sandwiches. That would have gone fine if the bread wasn't in the freezer. I'd seen mum microwave it before to defrost it so I attemped that but the first slice I tried ended up hot in the middle but still frozen round the edge, whoops! :P That evening I found out that there were some free downloadable Wiiware demos, so I downloaded a couple of those and really enjoyed playing Nyx Quest, so might pay to download the full version at some point.

On Fri morn in the post I received a card from Royal Mail saying that they couldn't deliver a letter for me because it was short of 8p postage! How ridiculous. I thought it was from my AYME buddy Kate because she told me that she'd posted me something in the middle of last week. So yesterday my mum went round to the post office for me and paid the missing 8p plus a £1 handling charge.

Fri eve Claire came round for tea and to attend mum's fortnightly knitting group - Knit Lit. A journalist visited them on Fri and they're going to be in a local magazine! While Claire was here we had great fun playing on New Super Mario Bros Wii together and we've now managed to get onto the 3rd world (there are 8 in total). And that night when I was feeling nocturnal I played on New Super Mario Bros Wii for a bit by myself (and got frustrated at the difficulty of it) and then played on an old Kirby game I'd downloaded for my Wii.

On Sat I tried to persude mum to take me out somewhere because I was feeling better, but she didn't feel like it. She said she'd take me out on Sun though. On Sat morn I received my CRB check in the post, that was processed quickly. Hopefully I'll soon be able to be the AYME regional contact for my area now the CRB check has been completed. The family DVD player died earlier in the week and dad couldn't fix it. It was old though, it'd been Chris' originally, then mine and then the family's. So dad picked us up another one which has been working well. When my dad came back from visiting my nan on Sat he had some late Christmas money for all of us from her. I got £40 :) On Sun night I wrote her a thank you note and that was posted yesterday morn.

On Sun I had quite a busy day. It didn't get off to a good start though when mum told me that she'd accidently put my Little Boots t-shirt in the tumble drier and it appeared to have shrunk! I need to try it on though to see if it's still wearable or not. It looks small, but mum tumbled one of my vests earlier in the week and that still fits.

Late morn me and mum went to see nan. We timed it badly though as we got there just as my uncle Dan (dad's brother, my nan's son) and his wife Diane arrived. Diane is lovely, but Dan is very odd, like all dad's siblings! :P He was such a know it all and kept talking over the rest of us. I hardly got a word in. They also kept turning the conversation to food, which isn't my preferred topic of conversation! And when you've got 4 people in a room who are all over 50 they can get quite nostalgic, which was quite boring for me as lots of the things they talked about were before I was born! Dan did ask me about my trip to Japan, but then before I'd said much he was telling us what he knew about Japan, despite him not having been there. And then when the topic of my ME came up Dan was so clueless. I couldn't tell him what ME stands for (I would recognise it, but can't say it) so told him that it's also known as Chronic Fatigue Syndrome. So he told me that he must have that because he's always tired! Then later on he told me that my ME will go away if I get motivated to do something!! Me and mum soon made our excuses and left but I left nan a copy of my CV to look at later and hopefully we'll be able to visit her on our own later in the week.

Someone from one of the flats when nan lives had died recently, so some of her books, DVDs and CDs were for sale for donations. I got 3 DVDs (The Graduate, Titanic and Runaway Bride) and Pretty Woman CD soundtrack. My nan has enquired about moving flats because the one that is now empty (that the woman who died lived in) is bigger than my nan's and has more windows.

Me and mum didn't feel like going straight home after that so went to a shopping centre in a nearby city instead. We missed the turn off on the way there so got a bit lost, but we got there eventually after an adventure! :P We had fun dodging round the huge Tesco there to avoid some people we had seen (my best friend from primary school and her mum) but didn't want to see us, lol. I tried on some jeans, but decided against buying them, and looked at some coats because my current one is at least 6 years old so I fancy a change. I didn't find one I liked though, so will keep looking. I bought a Wii game called Klonoa in GAME. I'd had my eye on it for a while, but because this copy was preowned it should have cost £15, but GAME had marked it down to £10 in their sale and then I had £.2.50 credit on my GAME reward card, so I got it for just £7.50. I've only played on it for a little while so far, but I like it :) I also got a DVD of a film that I like called Definitely Maybe for £3 in Tesco. Me and mum had some drinks in the cafe before heading home.

That evening I discovered that there is an ME support group in the city which meets every 2 months, so I'd like to give that a try. Their meetings are in the evenings though and my mum isn't keen on driving at night, so she might need some persuading. It would be too much for me to attempt to get there on the buses. The next meeting is in March, but it's a day that my mum is out in the aft and my dad is off work on annual leave, so I might be better to try for the meeting after that. I'll let you know.

On Sun night I was on Facebook when I spotted that Sophie (Chris' girlfriend) had posted that she was excited in her status. A friend had asked her why and she'd replied because they were moving tomorrow! I knew that they would be able to rent the cottage they wanted (it's still only local), but last we knew they were going to move in in March. I asked Sophie why Chris hadn't let us know and she said that he'd been too busy with work. Surely it wouldn't have been too hard to ring or even text mum to let her know though. Boys! Hopefully they'll be in their new cottage now.

When I had my transplant I developed some blisters/pressure sores on my heels from being in one position for a long time. They were very painful at the time, but healed ok. About 6 months ago my heels became quite sore after I did more walking than usual and recently they've been sore sometimes when I put pressure on them, even if I've not been doing much walking. When I went to the pharmacy yesterday aft (Mon) to pick some tablets up I also asked for an appt to see my GP, Dr I. Surprisingly he had a free appt that evening, so I took it. He said that my sore heels probably aren't related to the blisters/pressure sores at all. But instead he thinks I've got something called Plantar Fasciitis. It will go on it's own but could take a while, so until then I need to get some heel cushions to put in my shoes. He also pointed out that I had very flat arches on my feet, but I don't think that's anything to worry about. And Dr I also reviewed all my medications while I was there.

When I went to the pharmacy yesterday aft I was really surprised that the pharmacist that was there asked me who I was. I was sure that all 4 pharmacists know me as I'm in there often enough! Last time I went to the pharmacy they'd ordered me too many high calorie puddings, so I just took a few with me and they said to call back in to collect the rest when I needed them. But today the pharmacist I saw told me that they didn't have any high calorie puddings in so I had to order some more. I have a feeling that next time I go in they might have loads of high calorie puddings for me!

Yesterday aft mum gave blood at the village hall like she does regularly. All went well so she came home and cooked tea. I was upstairs when she shouted up to me, so I went down and found her lying on the floor because she'd felt very faint. She was ok but I ordered her to sit down and knit and stop doing jobs!

This morn I got a DVD (Bride Wars) from Tesco rental in the post, so I'm looking forward to watching that soon. And after mum paid the missing postage for the letter, it came in the post this morn. It was from my buddy Kate and contained a really pretty card she'd made herself, a lovely letter, a bracelet she'd made in my favourite colours and a phone sock :)

Tomorrow aft I've got my 2nd Pathways to Work interview and then that evening I'm going to go to the cinema with Claire to see a new film called Precious. Despite it being nominated for lots of awards it's not being released very widely, so our local cinema isn't showing it. We're going into the city instead because a cinema there is showing it. You can read an interview with the main actress here. And it was reviewed on Film 2010 last week. The film sounds very sad and powerful, but hopefully it'll be uplifting too. And on Fri eve I've been talked into attending the first meeting of a new discussion group for teenagers in the village. I mentioned it about half way through this blog update. V has said she's going, so I'll give it a try with her if I'm feeling up to it.

My 101 in 1001 list still isn't finished. I really do hope to finish it soon, I just need to check through the goals I've already got and find a few more. I want to get the list finished soon so I can make a start on working on my goals! :D

On DVD since my last update I finished rewatching the first series of Ashes to Ashes (I watched episodes 2 to 8) and watched all the special features. The second series boxset that I bought from Tesco online arrived in the post so I'm looking forward to watching that through sometime soon, I'm going to have a little break first though. I also finished my Vicar of Dibley boxset by watching the last episode and a behind the scenes documentary that was also on the DVD. And I watched the 2 Vicar of Dibley episodes which were missing from my boxset on Youtube. And I've rewatched the entire first series of After You've Gone which I rented. I also rented and watched Johnny English on DVD.

On TV since my last update I've watched 2 episodes of Nurse Jackie, the first episode of Glee to see what all the fuss is about - I wasn't very impressed, a BBC documentary called Too Old To Be A Mum?, 2 episodes of Tracy Beaker Returns, Film 2010, a Never Mind The Buzzcocks special, a Horizon documentary called Why Do Viruses Kill?, QI XL, The Gadget Show, a channel 4 bodyshock documentary called The Girl With Eight Limbs Grows Up and a very interesting Panorama programme called I Helped My Daughter Die which debates assisted suicide with a specific look at the story of a severe ME sufferer.

And since my last update I've also enjoyed a lot of music, music videos and TV music performances :) I've been listening to lots of music on my iPod including Lily Allen, Alexandra Burke, Taylor Swift and Little Boots. Taylor Swift has just won 4 Grammy Awards including best album for Fearless :) And I found this interesting link about Little Boots. And I managed to download some more album artwork on iTunes, but some still seems to be missing.

I recorded the Hope For Haiti concert on the hard disc recorder, so watched through that this week. I loved Shakira and Taylor Swift's performances so have bought them both from iTunes.

I've watched the music channels quite a lot and have been enjoying the frequency that Owl City's Fireflies has been played, and on the radio too. I'm happy it's now been at number 1 in the Official UK Top 40 for 2 weeks now :D Another music video that's on TV a lot is Bad Romance by Lady Gaga. It's a really odd video, definitely worth watching if you haven't already just for the spectacle! I'm not usually keen on Lady Gaga, but I do like Bad Romance now. And I've now seen the new videos for Ellie Goulding's Starry Eyed and Cheryl Cole's Parachute.

On a BBC 1 radio programme on Sun night I listened specifically to a programme called Switch because I'd heard that Diana Vickers would be interviewed on it and they would do the first play of her new single Once. I loved Diana on the X Factor in 2008, but am not sure about her new single. I might need to hear it more.

Also on Switch on Sun was an interview with Marina and the Diamonds. I'd not even heard of Marina and the Diamonds a fortnight ago, but love her now :) She came second to Ellie Goulding in the BBC's Sound of 2010. She's got an amazing voice and I love her original sound. Her new single is called Hollywood and was released yesterday. I've already bought it. You can see it on Youtube here. If you like it please buy it because Marina is up against Owl City, Jedward and more in the charts this week. I really hope it charts well, fingers crossed. Her debut album, The Family Jewels, will be released later in the month. I love 2 more of her songs - Mowgli's Road and I Am Not A Robot. And she's done an cover of Gwen Stefani's What You Waiting For, which you can lisen to here. I saw an interesting programme about her on Channel 4 where she was interviewed and performed some of her songs and you can see it here. There is also an interview with her here. Her tour tickets are going on sale on Fri and I'd love to see her, but I suspect that the venues she's performing at will be standing only and if so I wont be able to go :(

I saw Mika performing his next single, Blame It On The Girls on the results show of So You Think You Can Dance on Sat. And Mika was also interviewed and performed on Radio 2 that aft, which you can listen to here. It's very funny, especially his cover song at the end. And he talked about his tour too (which I'm seeing at the end of the month) and it sounds like it'll be amazing! I can't wait :D

Looking back at 2009 and forward to 2010

I've been thinking for a long time about what to put in this post as I wanted to make it really meaningful, but I can't think of anything meaningful to write. I thought that an easier option would be to write about what has happened to me this year and what I hope will happen next year, but my memory is awful :P After a bit of thinking I came up with some thoughts though.

This year:
~ My post transplant health has continued to improve
~ My eating has become more 'normal' and I managed 6 months with no artificial feeds at all
~ My tummy pains have become worse and more frequent, but I don't know why
~ I've had my 3rd transplant anniversary
~ My ME has become worse
~ I finally received a diagnosis of ME in August after being ill for 13 months
~ I joined AYME and Foggy Friends for support with my ME
~ I attended my first AYME meet-up
~ I went on an amazing trip to Japan in Feb
~ I completed my sixth form course and gained 5 International Baccalaureate Certificates
~ I cleaned and decluttered my bedroom and gave it a make-over
~ I promoted organ donation through the events National Transplant Week, Donor Day 2009 and the Save Jess campaign and also just generally without special occassions. I also spoke about organ donation to a large group of health professionals.
~ I attempted to attend the British Transplant Games 2009, but came home early because I wasn't feeling well
~ I've had just one planned hospital admission
~ I've got braces
~ I've stayed with my best friend Lizzy and her family twice
~ I began to write a blog and gained 7 followers
~ I've attended many concerts

Next year I hope:
~ My post transplant health will remain stable
~ I'll be able to come off enteral feeds for good
~ The cause of my tummy pains will be found and my tummy pains will be able to be controlled
~ My ME health will remain stable or improve
~ I will continue to promote organ donation. My friend Claire is a teacher and so I am hoping to give a talk to a group of teenagers about organ donation in the new year.
~ I will continue to write my blog regularly
~ I'll find a more productive way to spend my time than watching too many DVDs, lol
~ I'll start consistently spending less than my income
~ I will have a postive outcome from my ESA medical assessment and so will be granted the ESA benefit
~ To attend more concerts (including The Noisettes and Mika in Feb)
~ To attend more AYME meet-ups
~ To try to be less shy around new people
~ To possibly attend the transplant camp in the USA that I didn't manage to attend this year because of my health. That will depend on my health next summer though.

I also hope that my Nan's health improves so she can soon be discharged from hospital and get back home. And I hope that the health of all my family, friends and contacts in the ME and transplant communities will improve or at least stay stable. I hope that raising awareness of organ donation really will make a difference and hopefully stop 3 people dying in the UK each day while waiting for transplants.

And finally I'd just like to say thank you to my donor and her family for giving me the gift of life so I can look back on the year just gone and look forward to the year to come.

Children In Need, shopping and Nan

I've left it a little bit longer than I intended to leave it between updates, but it's not too long since I last updated, so hopefully this post won't be ridiculously long. We'll see :P

I'm attempting to read a book at the moment which is something I've not done for a while because of the trouble I have concentrating. I was chatting to a friend about one of my favourite films, Coraline, and she reminded me that it was based on a book. So I requested the book from the library to read. I'm not getting on brilliantly with it though - it's only a short children's book, but so far I've read less than half of it and that was in 2 sittings, so when I put it down and then picked it up again I found I'd forgotten what had happened so far, lol. I do wish I could read novels like I used to. I've also managed to read some of my latest Focus magazine, which is quite tricky reading.

My new Wii game (New Super Mario Bros Wii) arrived in the post on Thur. It's a great game, but I'm finding it very hard and so very frustrating at the moment. I've read reviews of it and they say it doesn't get difficult til later in the game, so I know it's me not the game, and that's annoying. I will keep persevering though when I've got enough patience. I've only played the single player mode so far, so am looking forward to trying out the multiplayer mode :) Both modes have the same levels though, so I know that wont be any easier.

Again I've not watched any full length DVDs since my update, but need to get watching them again because I've got 4 Christmassy ones rented at the moment (I normally only get 2 at a time, but have some bonus ones at the mo to make up for the ones I missed with the postal strikes). I did watch an episode of Absolutely Fabulous though :)

On TV since my last update I've watched some more musical things. I can't remember what it was called, but I recorded a programme on Channel 4 a few nights ago where Little Boots returned to her home town of Blackpool. That was a mixture of her talking and performing, so I enjoyed watching that. I also watched Little Boots being interviewed and performing on Loose Women. I watched the interview and performance Taylor Swift did on the Paul O'Grady show again because I had to show it to mum and I also saw her interviewed on This Morning. And I caught Pixie Lott performing on the Hollyoaks music show today.

Tonight of course I watched the X Factor. I thought Joe was brilliant and really hope he wins. I quite like Stacey too, but I don't care for the other 4 acts so got a bit bored during tonight's programme because I was only interested in 2 of 6 performances, hehe. I've just worked out that the winner will most probably be revealed on the 13th Dec, when I'm in hospital for my annual tests. But I'm staying in the hotel this time and I'm quite sure that the hotel room will have a TV, fingers crossed. I also watched the Xtra Factor tonight and was very pleased to hear that Little Boots (who was on their celebrity panel) also thinks that Joe is the best. Can't believe that she likes the twins though! I really hope that the twins go out tomorrow.

On Thur me and my parents really enjoyed watching Children In Need Rocks The Royal Albert Hall. I didn't like all of the performances (wasn't impressed at all by Leona Lewis), but loved Mika, Annie Lennox and Lily Allen :D I was impressed at how well Cheryl Cole did seeing as she wasn't miming! And the British Transplant Games got a mention :) Last night I enjoyed watching Children In Need. I think Peter Kay is a genius! I think I most enjoyed some of the music performances :)

I went to bed quite sensibly on Thur (I was in bed for midnight and asleep by 1am), but then stayed up til 2.15am last night to watch all of Children In Need! That probably wasn't sensible, particularly as I'd just about sorted my nocturnalism out, but never mind! :P I'm not going to try to get my bedtime earlier again yet because I know I'll have a late night on Mon. So I'm just going to go with it tonight and tomorrow night and then try to fix my nocturnalism again from Tue or Wed.

I'm really excited about Monday as I'm going to see Taylor Swift in concert at Wembley, yay! :D Me and mum are planning to go to London a bit earlier and visit a shopping arcade that my mum has discovered is the oldest in London or something like that and we might go to Harrods too (just to browse) if I feel up to it :) My copy of Taylor Swift's new CD - Fearless Platinum Edition - arrived in the post this morning. And it's brilliant - it includes 5 new tracks, 1 new version of a track and a DVD with music videos, behind the scenes of music videos, a documentary about behind the scenes of her tour and more! :D

I was planning to see my friend F tomorrow for a DVD day, but I've cancelled that so hopefully I'll be more likely to feel ok for Mon, fingers crossed. I've felt quite tired over the last few days, but that's because I've been overdoing it yet again! :P I was still tired on Thur from a busy day on Tue, but felt better yesterday so went out. Me and mum didn't go to the city we usually go to, but went to another equally local city to do some shopping :D I had a nice, but tiring, day and my feet hurt at the end of it! I bought a birthday card for dad because it's his birthday on Dec 3rd, 4 CDs at bargain prices in a charity shop, a fantastic pair of blue earrings that look like zipper pulls and this small portable iPod speaker that looks like a lego brick :D I guess after shopping yesterday and then having a late night last night it's no surprise that I've felt very tired today :P

I did manage to go with my parents to visit my Nan today though :) As I said in a previous update, she had a fall almost a week ago and bumped her head and broke her wrist. She's got carers visiting her at home 4 times a day at the moment, so doesn't have to stay in hospital which is great. She's got poor mobility (she broke her leg badly a few years ago and it didn't mend properly because she's got osteoporosis), so relies on a walking frame to get around her home. But she's struggling to use her walking frame with a broken wrist, so she's finding moving around very difficult at the moment. Hopefully as her wrist heals though she'll be able to use her walking frame more easily again. Lots of her relatives live locally so they've all been visiting her to help her out and keep her spirits up. We cheered her up today and mum got some shopping in for her. We'd not seen her since her (86th!) birthday on the 9th, so took over all her presents today too.

This evening I came to put my NG tube in and discovered that I'd run out of my preferred tape (the one that sometimes falls off). I'd ordered some from the surgery a week or so ago, but forgot to collect it, whoops. I'm shifting my days off feed around a little this week so I can have Mon night off, so needed to come up with an alternative tape plan for tonight and tomorrow night. I found a small amount of my preferred tape cut up into pieces for spares and kept by my bed, but not enough for 2 nights. So I've used the original quite sticky tape (Mefix) tonight, but know it wont want to come off easily in the morn and will probably leave my cheek red tomorrow. But at least I've got some of my preferred tape left for Sun night so my cheek wont be red for going out on Mon. And I'll pick up some new tape from the surgery in time for Tue night.

I received an email from my dietician on Fri. I only need to have a high calorie drink on the days after I've had a night off feed. But she didn't answer my question about when to reduce my feeds to just 3 nights a week. I managed a high calorie drink diluted and drunk more slowly on Thur and today and they didn't upset my tummy at all. So if my weight is ok on Tue I'll then reduce my feed to just 3 nights a week :) I don't think I'll be off feeds by Christmas, but I'll need to ask my dietician what she thinks. That was the original plan though, but if that's not going to happen I'm happy to stay on them for a little bit longer - maybe til sometime in Jan. I don't want to reduce them too quickly because if I do that I might lose some weight and if so I could end up having to be on the feeds for longer.

Yesterday my bedside lamp broke :( I really liked it because it was a touch lamp (so easy to turn on in the night for finding my way to the toilet) and had 3 brightnesses so didn't wake me up too much if I needed to put it on in the night. And it was lilac so matched the walls in my room. Dad will try to fix it, so I've got my fingers crossed that it's a mendable fault. But if he can't fix it then I'll be hunting for a new one.

This evening I was writing a long email on Facebook and somehow I must have clicked something which made my whole email just disappear. I was so frustrated. So I had to rewrite it all, grrrr.

I've just realised I don't have a Blogger profile photo, so will have to see if I can remember to sort that out :)

Ill :(

Sorry it's been a while since my last blog update, but I've not been very well this week. I've got a tummy bug, a cough (which has gone to my chest) and a cold. Yuk :( The tummy bug came last Monday and although I'm slowly getting better, I'm not there yet. And the cough and cold show no signs of going yet.

I spent last Wednesday and part of Thursday in Hospital A. When I developed the symptoms of the tummy bug on Monday night I was immediately quite worried because the symptoms are very similar to those in rejection of the small bowel. So I contacted Hospital B on Tuesday and a registrar said that because I hadn't got a temperature it was unlikely to be rejection, but I should get checked out at a local hospital anyway. I decided to go to Hospital A (the adult hospital I'm currently transitioning to) rather than Hospital H (my local hospital) because Hospital A isn't much further away. So I rang Hospital A, which was big palaver as I found it really difficult to get hold of the right contact, and arranged to go in for lots of tests on Wednesday. On Wednesday I couldn't see my consultant (Dr W) as he wasn't in that day, but saw his fellow consultant (Dr M) instead. He was great though. I was put on a drip because I was dehydrated and had lots of blood tests, x-rays... done. I went home that evening after being rehydrated, but returned the following morning for more blood tests. Luckily all the tests came back clear, indicating that the cause was probably viral, so I'd just feel better in time. I also discovered on the Transplant Kids message boards I use that some other children from Hospital B's team at the British Transplant Games had been ill at the start of last week, so it looks like there might have been something going round there.

It was great to have the opportunity to give Hospital A a test run and to get to know how it worked a bit better. All the staff on the Gastro Ward there (where I was treated this time) were really friendly and I think now I'd feel more confident if I needed to spend time there again. The woman in the bed next to me had also had a multi-organ transplant, so I spent some time chatting to her, which was nice. I had 3 sets of bloods taken over the 2 days and was very proud of myself because I had all of them without cold spray, which I usually use to numb the skin beforehand. The spray means that having blood taken hurts less, but it also makes the veins constrict, so makes the nurse's job harder. And I also escaped to the shops on the Concourse briefly where I bought myself a couple of magazines and a nice t-shirt :)

I've not had to return to the Hospital since last Thursday, but have been keeping the team there updated on my progress with phone calls. My tummy quickly settled during the days, but still is causing me some trouble at night, which keeps me awake. This was a bit better last night though, so fingers crossed I'm now on the mend. I'm not very good at drinking, as I never feel thirsty, but have been making a big effort with it while I've been ill, so have managed to prevent myself getting dehydrated at home. I've not been eating properly for a week though, so am quite nervous about weighing myself tomorrow as I know I'll have lost a significant amount of weight. Hopefully I'll be able to build my eating back up relatively quickly though once I'm completely better and get my weight back up a bit.

I've not done much at all this week as I've felt awful and had very little energy. I've spent quite a lot of time relaxing and watching DVDs though, which has been nice :) I discovered a great Sandra Bullock film called '28 Days' which I would highly recommend, quite enjoyed 'The Holiday' though thought it was bit long, loved re-watching 'Bridget Jones' Diary', got very confused by 'Crash' and had a good laugh with my mum at 'Intolerable Cruelty'. I went shopping briefly on Thursday as Hospital A is on the outskirts of the city and bought a friend's birthday present, a t-shirt and a much needed new pair of slippers. And because I was feeling a bit better today I went into town where I bought some very cute ladybird earrings and a travel Cribbage board. I used to be able to play Cribbage, but hadn't played for a long time, so last week my dad re-taught me and we've enjoyed playing games together in the evenings. Our Cribbage Board is quite big though, so I thought it would be very handy to buy a travel board for taking into hospital with me in the future. After my trip into town earlier this afternoon I've been feeling exhausted, so I'm looking forward to hopefully getting some help and advice tomorrow at my ME appointment. Will let you know how it goes.

BTG and my health

My plan of avoiding rice to help my tummy aches hasn't worked. After stopping eating rice I had no tummy aches for 5 days, but then they came back again, just as bad as before. Very frustrating. But I've had a chat to my parents and we've thought of another plan that might help my tummy aches, so we're giving that a try and if it doesn't work I'm going to contact my consultant from Hospital A to ask his advice. Because a transplanted bowel doesn't have the nerve connections a normal bowel has, peristalsis (the contractions of the muscles of the digestive system to push food along) either doesn't occur at all or occurs less than normal (can't quite remember). So food moves through my digestive system much faster than it should, but I take some tablets called Loperamide to slow it down. I used to take lots of these, but had got it down to a very small dose. Now I've tried increasing my dose slightly to see if this slows my digestive system down and eases my stomach aches. Fingers crossed it helps.

Last Monday I had a lovely day when an old friend came round. I was at secondary school with K, but hadn't seen her properly for around 3 years. We lost touch for a while, but got communicating again through Facebook quite recently and so I invited her round. It was great to catch up with K and hear about what she's been up to since I last saw her. There is only one other friend I've kept in touch with from secondary school - F. I've seen F a couple of times over the last few years, most recently around Christmas time last year. She's coming round a week on Thursday and I can't wait to see her :)

On Thursday me and mum set off to the British Transplant Games as planned. We settled into our accommodation in the afternoon (at the University of Warwick) and found our tea before setting off on the bus to the Opening Ceremony in the centre of Coventry. The Opening Ceremony was good, if a little disorganised! It was great to meet up with some friends from the Transplant community (especially Cat who runs Transplant Kids and Sarah, mum to Wills), meet some new people and see my physios and dietician outside of Hospital B. I felt quite tired after that, so headed back to the accommodation rather than attending a transition meeting like I'd originally planned. The next day (Friday) I woke up exhausted, so withdrew from my 10 pin bowling event and spent the day resting. However that evening me and mum discovered Warick Arts Centre on the university campus and found out that they had a little cinema there. So we saw a fantastic film called 'The Class'. On Saturday I was exhausted again, so me and mum packed up and came home. I was disappointed that I couldn't participate in my event or stay til the end of the games and I'm very frustrated with my exhaustion getting in the way of everything. However my appointment with the M.E. clinic is fast approaching (August 11th), so hopefully I'll be able to get some help there. Have just heard from Cat at the games - Hospital B won the best liver team and the best children's team (for the 14th year in a row), so congratulations to everyone who was involved :D

When we got home yesterday I just spent the rest of the day relaxing. While I was away I recorded Mika at the iTunes festival and another gig featuring Little Boots and the Pet Shop Boys, so I enjoyed watching those yesterday. I also watched the final episode of Psychoville, which was good but left lots of unanswered questions, suggesting there will be a second series. And I saw Mika's new video (for We Are Golden) on the Internet. If you're interested in watching it then click here, click on 'Enter' and then when the intro video has finished click on the bit about a Mika exclusive at the top. Let me know what you think.

This morning I felt ok, so went out to browse round our local carboot sale with my parents. I bought 7 DVDs for just £8 - bargain! Then we picked my Nan up and brought her back to our house for the afternoon. It was lovely to see her, but I felt exhausted again :( So I spent some of the afternoon just relaxing in my room and some with the rest of my family. I showed my Nan my photos from last Saturday and we all watched a film called 'Little Miss Sunshine' together. I'd highly recommend it if you've not seen it, as it's a fantastic film!

Before my transplant, when I used to be on TPN, I was under Hospital G. I used to stay in there quite often, so made a couple of close friends over the years - C and I. However since my transplant I've almost lost touch with them apart from the occassional email to I. A few weeks ago my mum received a phone call from C's mum, who was quite worried because it looked like C might need a small bowel transplant. She knew we'd been through it, so had lots of questions for mum. C isn't dangerously ill as I was before my transplant, but her quality of life at the moment on TPN is poor and a transplant could give her a better quality of life. I emailed C saying she could speak to me anytime, but she's not been in touch since, so I don't know if she will be or not. Hopefully her mum will keep my mum updated though. Then when I arrived back home from the British Transplant Games yesterday, I found an email on Facebook from I. She asked if she could have her home phone number because a transplant had been mentioned to her and her mum wanted to speak to my parents. So last night I's mum spoke to my dad on the phone. Like C, I has been given the option of whether she'd like a transplant or not as it could improve her quality of life. I is going to phone me soon to chat to me about my experience. With me it was a matter of life or death, I had no choice in accepting a transplant as I knew without it I would die. It must be so much harder for C and I, being given the choice. For C and I, horses are their life, but post transplant pets are a big risk to your health, so that will just make the decision harder for them both. All I can do is tell them about my experience and help them to decide whether a transplant would be the best option for them or not.

One of the children I've met at hospital B is an inspirational little girl, K. She had a small bowel and liver transplant at 11 months old and is now 5. She's had a rough time since Christmas and has been in and out of hospital. However she has a fantastic sense of humour and is almost always cheerful and smiling. Last week I heard from her mum that K is going to need a second transplant. After I heard this news I contacted Live Life Then Give Life about their Robyn's Rainbows project. This project sends out balloons to members of the transplant community who are having a tough time. So I emailed them and asked them to send a balloon to K to cheer her up :) I know K is a fighter and she's been a real inspiration to me, so I hope she soon gets her transplant so she can begin to live her life again.

Not feeling well

Sorry it's been a while since my last update. I've not been feeling very well over the last week or so. I've just been exhausted and have been struggling with tummy aches too. My tummy aches have been going on for quite a while now, so I mentioned it to my consultant at Hospital A at my last clinic. He suggested eating more fruit and also prescribed me some tablets to take before eating. However, the suggestions didn't help and since the clinic my tummy aches have actually been more frequent and more painful. I've suspected for a while that it might be related to something I'm eating, so am currently experimenting with cutting rice out of my diet (which is tricky because I love rice pudding!). I've only been avoiding eating rice since yesterday, but as I'm writing this I've had no tummy aches for over 24 hours :) So I'm going to continue with no rice for a few more days and see how it goes. I'll keep you updated.

My exhaustion has been making me quite fed up, but my first appointment with the ME unit is on Aug 11th, so that's just over 2 weeks away now. I'm hoping to get some advice and support there. I'm still planning to attend the British Transplant Games next weekend, as I'm really looking forward to the social side of it :) I was originally planning to compete in 2 swimming events and 10 pin bowling, but because of my health I've withdrawn from the swimming events. But I'm still hoping to give 10 pin bowling a try if I feel up to it on the day. I'll be away from Thurday til Monday.

While I've been very tired this week I've taken the opportunity to watch some films :) I borrowed the DVD of 'Marley and Me' from the library and really enjoyed it. Then on Thursday I went to the cinema with my mum and my friend Claire to see 'The Proposal'. That was great and very funny :D I think Sandra Bullock is a brilliant actress. I've also just read a really good crime novel called 'The Power of Three' by Laura Lippman, which I'd highly recommend. And on Thursday I bought a new Wii game called Wii Sports Resort which I've enjoyed playing on when I've had some energy.

Luckily I felt much better yesterday, so was able to meet up with some friends in London last night for a meal. Later this week I'm hoping to make a blog post about yesterday as I've got quite a few photos to share and had such a fantastic night :D I'm feeling very tired today though.

Throwing out school notes, my health, music, films and books

I've not done much over the last 10 days, but thought I'd write an update anyway because I've done a couple of interesting things. Sorry it's been a while since my last update, but I hope you liked the Japan posts :) I've got loads of photos on my laptop, so am going to try to do a few more memories/photos posts soon.

The day after my last update I sorted through all my sixth form stuff and class notes. I'm not very good at throwing stuff out and tend to be a bit of a hoarder, but was very happy that I got rid of loads and loads. All my work was in lever arch files which were stored in 2 crates on the dining room floor, so my parents are very happy to have the floor back! And the few bits I've kept (my Japanese notes and flashcards, my homework diaries, my yearbook, my reports and some bits for memories) now fit happily on the shelves in my bedroom :)

I've still been quite tired, so had to cancel my plans to run a stall to promote organ donation at my village Feast Day last Saturday. I've been quite fed up and frustrated with it all at some points this week, but I'm really hoping that I'll get some advice when I have my initial meeting with the local ME unit on August 5th. For the moment though I just want to do so much, but don't have the energy, which is very frustrating. I really want to try to learn to drive again, but I know I used to make mistakes and get very upset at myself when I was just a little bit tired, so I think that should probably wait til I feel better and less tired. And I also don't really have the money at the moment either, learning to drive is soooo expensive! I took my theory test when I was learning before, but that expires in November, so it looks like I'll have to take my theory test again. I'm not conerned about retaking it as I found it easy, but it's just more money! And I want to work too, but I just don't have enough energy at the moment. It's the British Transplant Games at the end of the month and it now looks quite unlikely that I'll be feeling up to competing. I'll definitely attend though as it's a big social event and I'm really looking forward to catching up with some friends there and hopefully meeting some new people too. However my weight has been staying stable, which is very positive and since my last hospital appointment I've been making a big effort to make my diet more balanced, so have been working hard to try new foods, especially fruits. I've discovered I love plums, but unfortunately so do the rest of my family, so other people keep eating the ones mum buys me when she goes shopping!

I think I've mentioned before that I really like Little Boots. Well, I've bought tickets to see her live in October, which I'm really excited about! She's doing a mini tour of the UK, but isn't doing any big cities, like London. However, she is coming to my nearest city, yay! The tickets were very reasonably priced, so I'm going with my friend Claire and my mum. I can't wait! :D I found lots of good Little Boots videos on Youtube too, which I've enjoyed watching. This week I was also really pleased that I was able to fix a problem with my iPod that had been annoying me for ages (lots of artists wouldn't show up in the artist listing). Quite frustratingly a key has fallen off my laptop keyboard this week and I'm struggling to work out how to fix it as I think the bit underneath might need gluing back into place. I'm going to ask my dad about it tonight and hopefully he'll know what to do. And my laptop screen seems to have acquired a scratch, but I've no idea why. Apart from that my laptop is doing quite well considering it's 4 years old :)

I've been relaxing quite a bit since my last update as I've been very tired. I like watching films and have watched a couple of good ones this week. The Curious Case of Benjamin Button was much better than I expected, but it was quite long. Another film I watched was called Panic Room and all the reviews I'd read before I saw it said it was very scary and tense. It was a good film, but I didn't think it was scary, and I think I found it funnier than it was intended to be! And then very excitingly I saw Harry Potter and the Half-Blood Prince on Wednesday with my family, Claire and Claire's friend. I've never seen the cinema (a big multiplex) as busy - every showing of Harry Potter on Wednesday was completely booked up, there were no parking spaces to be found, the foyer was packed... We'd prebooked our tickets in advance, but got to the cinema about an hour early to queue for good seats. The film was brilliant and I'd highly recommend it :D And I bumped into an old friend at the cinema too, which was nice.

I used to be a very avid reader, but have struggled to read recently while my concentration hasn't been very good. However, I've got back into reading this week which has been lovely :) So far I've just read a few Young Adult books from the library, but think I might read the Harry Potter books next. I've read books 1 to 4 before, but haven't read the last 3. So I want to reread the first 4 and then see if I can get through the final 3 :)

Cinema campaign, struggling in the heat, a weight gain, wasps, exam results and a hospital clinic

Sorry it's been so long since I last updated. I felt much worse in the heat and had some awful days last week. Luckily with the weather cooling a bit, my energy and tiredness seem to have improved too. And I seem to have been really busy since the weekend, so I've just not had chance to update. Sorry in advance for the length of this update, I'll try not to waffle on too much.

Last Monday (29th June) I returned to the cinema to speak to the named person about the organ donation leaflets. He was very rude. He had a copy of my letter in front of him, but didn't read it and started writing guest passes out. I explained what I was asking for and asked him if he'd read the letter, but he said they only did guest passes and couldn't support charities in any other ways as they had just one chosen charity they helped. So I left organ donation leaflets in the toilets and on windowsills ;) Me and mum saw a film called 'The Hangover' which was very funny and I'd highly recommend it. I didn't feel too well in the cinema though. When we came out we checked in the toilets to make sure that the cleaners hadn't removed all the leaflets and were happy to find that 3 had been taken :)

That day I pre-ordered a new Wii game called Wii Sports Resort online, so I'm looking forward to getting a copy when it's released towards the end of the month. Me and mum made the most of Monday evening, playing card games together, as we knew the boys would be returning from Glastonbury that night. They got back just before 11pm, very happy. Dad bought mum some wool, which she was delighted with, and bought me a lovely hand-dyed shirt. We all had a very late night as the boys were full of their adventures and both had to shower before going to bed as they'd not showered since they left!

Last Tuesday (30th June) I was delighted to find that my weight was up nearly 2kg from the previous week. The high calorie drinks I've been taking 2 of each day have clearly worked, despite tasting disgusting! My dietician was very happy with my weight gain too :) I felt quite rubbish with hayfever for most of Tuesday. I usually suffer mildly with it, but last Tuesday I couldn't stop sneezing and my throat swelled up a bit too, probably because it was a really hot day. I didn't have much appetite either, but managed to drink plenty. I found the perfect way to cool down in the heat was by watching a film called 'The Day After Tomorrow' which is all about an ice age!

A few days before my friend had given me back Wii Fit which she'd borrowed for a while, so I played on that for over an hour. I'm not sure that was a very sensible idea in the heat though! And that evening I enjoyed a lovely walk round the village with my parents, which is something we don't do very often. We just wandered and it was nice to be out as it was much coooler by that time. I didn't think to take my camera though, which I regretted when we walked round the village pont and saw some adorable ducklings. When we got back I went on my Wii a bit more, but played a puzzle game as I thought I'd done enough on Wii Fit for the day. The hot days and mild nights brought all the bugs in and that day I let 2 damselflies out the window. They don't bother me, but I have a real phobia of craneflies - yuk! And they kept coming inside too :(

Last Wednesday (1st July) I really regretted my extended session on Wii Fit the previous day as my legs really really ached. Paracetamol didn't help at all, but codeine eased it a little bit. I was happy to receive my Focus Magazine in the post and a DVD. I really like the actress Sandra Bullock and have been watching lots of her DVDs recently. So I couldn't believe it when I found a DVD called '28 Days' on Amazon Marketplace for £1.40 including P&P. I went for a walk round the village with my mum with the aim of calling in at the library for her to do a bit of cleaning (mum works as a library assistant in the village library and is also the cleaner). It was really really hot and just as we approached the library mum realised she'd left the library keys at home. So we walked back home and then returned to the library in the car as we were both exhausted from the heat. When we got back home me and mum were really tired, so both had a nod.

I didn't feel refreshed after my nod, so just relaxed for the rest of the day. I played on my Wii for a little while before tea. Then after tea me and mum showed dad Lady GaGa's Glastonbury set that we'd recorded. Neither of us like Lady GaGa's music (apart from one song), but thought dad ought to see her outfits. I've found a clip on Youtube of her most daring outfit, which you can see here. The video isn't great, but will give you an idea of what she was wearing. It certainly made my family laugh! After that I watched a film called 'Mr and Mrs Smith' before bed. It wasn't the best film I've seen, but was better than I expected and quite funny in places.

Last Thursday (2nd July) my legs were still very achy from playing on Wii Fit on Tuesday. I got some more exciting post - a DVD of a Pink concert I'd bought online :) I really like Pink, so was disappointed to find that my tour t-shirt had been ruined in the wash :( Part of the design had come off, despite the t-shirt saying you could machine wash it, grr. And 2 DVDs I'd ordered from my local library (Premonition and Gran Torino) had come in. So that morning me and mum started watching Premonition, as we both like Sandra Bullock, so had high expectations of it. However not long into the film I felt really ill - I felt really hot, had a bad headache and felt sick. I took some antisickness tablets and then fell asleep on the sofa. I slept solidly for 2 hours! I don't think the heat agrees with me.

I had a lazy afternoon and started the first novel I'd read for ages. It was called 'What Was Lost' and I'd highly recommend it. I also watched Lily Allen's latest music video on the Internet. I can't believe her choice of the next song to release though - why 'F*** You'? The radio stations and music channels aren't going to be allowed to play it! I did find a hilarious clean version on YouTube though. I relaxed in the evening too, so finished the film. Recommendation - don't watch Premonition, it has a really bad ending. After I finished watching the film I watched some TV, including the brilliant Psychoville. After that I felt awful again, a bit like I had that morning, but my headache was a lot worse. After lying on the sofa in the dark for a bit it eased, so I read and then went to bed.

On Friday (3rd July) I recieved the reciept for my payment for the accommodation for the British Transplant Games in the post. I forwarded it on to the team manager for hospital B and should be able to get the money refunded as the hospital have received a grant to be shared between the families participating in the games this year. I still don't know whether I'll be a participant or a supported at the British Transplant Games this summer as it'll depend on my health, but I'm really looking forward to going for the social side of it :) I felt completely exhausted so went back to bed from midday til 2pm. It didn't help though. I relaxed that afternoon, reading and watching the music channels, and then tried to have a nod at about 4.30pm. I couldn't sleep though. My friend Claire came round for tea, so she took my mind of my lack of energy for a while. We chatted, watched music videos on the Internet and watched Jonathan Ross together. I can't stand Jonathan Ross, but put up with him on Friday because I liked his guests - Sandra Bullock, Emma Watson and Little Boots :) And that evening me and my family prebooked to see the new Harry Potter film on release day. Although I'm a keen reader I never got further than the 4th Harry Potter book, so thought it'd be great to see the film on release day because then there'd be less of a chance of someone giving the plot away for me. However that didn't work. Reader's Digest interviewed the actor who plays Draco Malfoy and in the article summarised the whole plot - they must assume everyone has read the books! And then H (the girl I babysit for) told me all the details of Dumbledore's death! Oh well.

Friday evening our wasp saga began. Dad spotted that wasps were making a nest in the outside wall of the house, where a plug from the insulation must have fallen out of the wall. So he blocked the hole up, which made the wasps very angry, but they soon calmed down. We thought that was the problem sorted - we were very wrong!

I woke early on Saturday (4th July) morning because there were some workmen next door making lots of noise. The bathroom window and door had been shut all night, but mum went in there in the morning and discovered hundreds of wasps flying around! Dad thought he knew how they were getting in, so blocked up some holes in the bathroom. It didn't work though and they continued to come in. Dad then realised that there was another hole in the outside wall which was allowing the wasps to get into the gap between the inner and the outer wall and from there they were the flying through different pipes and coming out in the bathroom! So he bought some chemical stuff to kill them and sprayed it everywhere. It worked and they all dropped down dead. Then Alf got home and started to call dad a murderer! Since then we've been finding lots of dying wasps everywhere, but the numbers seem to be decreasing now. On one of the early days dad threw one dead wasp in the toilet and flushed it. I then noticed there were more than 10 wasps in the toilet bowl. They'd all sheltered from the spray under the rim and then been swep into the bowl with the flush. On one occassion I picked lots of dead (or so I thought) wasps up from the floor and tried to flush them down the toilet. They didn't flush and then I realised they weren't actually dead. So mum fished them all out, but they died anyway from the chemicals. I wear glasses and can't see a thing without them. So when I'm in the shower or washing my hair I'm quite vulnerable because I can't see anything. So I've been clearing all the dead wasps away before I shower (but now I throw them out the window instead of flushing them in case they're not dead). But one day I'd just finished washing my hair and was wrapping the towel round my head when I heard a buzzing. I couldn't see where the wasp was so ran out the bathroom and shut the door behind me. But I'd left my glasses behind. I wasn't going to go back in and feel around for them as I was sure I'd end up putting my hand on the wasp, so had to call mum to rescue my glasses for me! I'm not the only one in my family though who has been bothered with the wasps - one night my dad rolled over onto a dying wasp in bed and got stung on his arm!

I was really tired on Saturday so went back to bed from 11am til midday and then again from 1.30pm til 4pm. I felt a bit better after that, so had a go on Wii Fit, but didn't overdo it! I also started a new novel (called Sharp Objects), which I really enjoyed. That evening with my family I watched a film called Gran Torino. It was really well made, but very depressing. I really struggled to get off to sleep that night, maybe because I'd slept so much during the day.

I wasn't too tired on Sunday (5th July), which was nice after having felt exhausted for most of the week. I sat for H in the morning, which was enjoyable. She's lovely and we just play games together. I took round a bag of bits for her that I'd found during my big room clearout that I thought she might like, so she really enjoyed playing with some new stuff. I also took round her birthday present as she'll be 11 later this week. I can't believe she'll be starting secondary school in September, she wont be needing me any more soon! That afternoon I felt well enough to go to a friend's BBQ with my family. I ate loads of yummy BBQ food and enjoyed socialising. Sunday marked the start of National Transplant Week, so I also gave out some organ donation leaflets there too :) I woke up in the night with cramp in my leg.

On Monday (6th July) morning I spoke to a liver nurse from hospital B about my concerns about the transition to hospital A. She told me she'd spoken to a transplant co-ordinator from hospital A and she'd hopefully be in touch with me later in the day before my clinic on Tuesday at hospital A. Later that day the transplant co-ordinator from hospital A rang me and she seemed really nice. She gave me her contact phone number and said she'd meet me at hospital A the next day. On Monday morning I also relaxed and watched a really good film called Rachel Getting Married with my mum. I'd recommend it.

At 2.15pm on Monday afternoon I was able to access my exam results online using a special PIN that school had given me. I was really happy with my results as I'd done better than I'd expected given my health over the last year. I didn't take the full International Baccalaureate Diploma, but instead took International Baccalaureate Certificates in 5 subjects. Each subject is graded from 1 (which is the lowest) to 7 (which is the highest). I got 5s in English literature, psychology and biology. And I got 6s in environmental systems and Japanese :D After receiving my results I was in touch with lots of friends via Facebook and text. Some of my friends had got results as good as or better than they expected, meaning they had places guaranteed at their first choice universities. But quite a few of my friends got lower results than they were predicted, so have to contact the universities they applied to to see if they'll still accept them. And a couple of friends failed the diploma, so will have to retake the exams.

After receiving my results and speaking to friends me and mum headed out into town in the pouring rain. I went to the optician because I'm still having problems with one of the arms of my glasses working loose, even though they replaced the screw last time I was at the opticians. This time they tried one last plan to fix the arm (applying some sticky stuff to stop the screw from moving) and if this doesn't work then they'll replace my frames. I wanted to treat myself after getting my results, so preordered a DS game (Professor Layton and the Diabolical Box) from GAME, bought another Sandra Bullock DVD (Practical Magic) and bought myself a CD I've been looking to buy for a while (Hands by Little Boots). I think Little Boots is great - her album is really catchy and I was very impressed to find that she's written or co-written every song on it. The only single she's released so far is New In Town, which you can see the video for here. Her next single is going to be Remedy, which you can see her performing on Friday Night with Jonathan Ross here. And possibly my favourite single from her album is Earthquake, which you can listen to here. Then me and mum met up with my friend Claire at the garden centre for a drink. Monday evening I just relaxed - surfed the Internet, watched TV, listened to my new CD on my iPod... I had a late night.

I had an early start on today (Tuesday 7th July) as I had to get up at 7am to get a lift with my dad on his way into work. Dad dropped me off at my old school, so I could catch up with some friends who I'd not seen since we finished school at the end of May and say final goodbyes and thank yous to my teachers. Me and Catherine were really cheerful because we'd got the results we wanted, but there were lots of students from our year waiting to speak to the deputy head of year because they hadn't got the results they needed to get into university :( One friend had been planning to meet us at school, but I recieved a text from her saying she'd had too much to drink the night before, so couldn't make it in! So we popped round to her house instead (she lives close to the school). I also gave out some organ donation leaflets while I was at school. The buses are meant to run every 10mins, but we ended up waiting for 35mins for a bus in the pouring rain! And then the bus took 40mins to travel just 5 miles across the city! Anyway, I eventually arrived at hospital A.

At hospital A I helped out on the organ donation stall they had in the foyer for National Transplant Week. I enjoyed speaking to people and trying to persuade them to join the organ donor register. It was also good to meet other transplant recipients, though they'd just had liver transplants. A girl who looked a couple of years younger than me and her mum came past our stall and stoppped to chat. The girl had just been told in clinic that she needed a kidney transplant so her and her mum were a bit in shock. Me and a liver transplant recipient spoke to her and her mum about the differences transplants had made to our lives and all about how good life after transplant could be, which seemed to reassure them both. And we persuaded her mum to sign the family up to the organ donor register, as it was something she'd not even thought about!

My clinic went really well and my consultant (Dr W) reassured me about some concerns I had. The main points discussed were:
~ My transition can be delayed, as it's totally up to me when I leave hospital B.
~ My unbalanced diet probably isn't helping my tiredness.
~ My consultant thought he knew why I've been struggling with stomach aches, so have got a prescription for some tablets that should help that.
~ My headaches are because I've not been drinking enough, so rather than aiming to drink 1 litre a day I now have to aim for 1.5 litres a day.
~ My tablets need to stay as they are, apart from lowering the dose of one.
~ I've had some disomfort in my side for about 6 weeks, so asked about that. It's an incisional hernia, which means my stomach muscles have weakened due to all my surgery. It's nothing to worry about if it doesn't hurt, which is a reassurance as I had no idea what it was. But if it does begin to cause problems I can have an operation to fix it.
~ My annual tests to check for rejection might be done at hospital A for the first time this year rather than hospital B, but my 2 consultants will liaise about that and let me know.
~ My next appointment will be in 3 months, rather than 6, because there are some small concerns at the moment and I live locally, so that's fine.

After the clinic I met the transplant co-ordinator, the clinical nurse and the dietician from hospital A. They all seemed lovely and I've got their contact details now. I spoke to the dietician about trying to make my diet more balanced and I've got some good ideas now. I had bloods done by the clinical nurse. She reassured me that she was brilliant at taking bloods, but the vein collapsed when she had the needle in, so she had to try again. She then blamed it on my veins and said they must be delicate, when I know they aren't, as I never usually have problems! I got a tour round the 2 wards (if I'm in for biopsies, bloods or anything else routine I'll be on the gastro ward, but if I'm in with any tx related problems, such as suspected rejection or infection then I'll be on the transplant ward). And I met two small bowel transplant recipients from the transplant programme at Addenbrookes, which was great. They were the first adults I'd ever met who have had small bowel transplants! It was lovely to speak to them and they both looked really well, despite not being long post transplant (15 months and 6 months). And the two of them were a couple - they'd met in hospital :) Hospital A haven't done many small bowel transplants, so the few recipients they have are very close and keep in regular contact.

On the way home I heard from a liver nurse at hospital B. When I was there last month (at the family day) one of the nurses asked me if I'd ever seen a photo of my old organs, as apparently they have all been photographed. I said no, but I'd be interested to see one. So they've found a photo of my very diseased liver, which they'll pop in the post to me. But they thought they'd warn me that it's on its way as apparently it's pretty horrible!

I left the house at 8am and got back home at 5pm, which is a very long day for me. I've felt quite tired this evening, so have just been relaxing - surfing the Internet, watching some TV, listening to music and typing this update up. I'm off to bed now.

Happy

I'm feeling very happy at the moment and these are the reasons why:

• I have finished decluttering and tidying my room
  
• My lovely sofa has just been delivered
• I have bought a desk chair which will be delivered on Monday
• I am feeling well and have been for nearly a fortnight now
• This morning I purchased tickets to see Taylor Swift perform at Wembley Arena in November
• I've not seen my best friend from school since we finished 4 weeks ago, but she is coming round on Tuesday
• I will see all my other school friends at a friend's birthday party next Saturday
• I have just discovered that Hospital B's Team for this year's British Transplant Games has received a grant towards the costs, so I will be refunded the money for the accomodation (which was very expensive)
• I've just seen my older brother Chris and his girlfriend who I'd not seen for a few weeks
• I've just learnt how to get photos from my phone onto my laptop, which is how I've been able to provide the photo of my sofa above :)
• My dad and younger brother Alfie are very happy as they're off to Glastonbury next week
• Me and my mum will have some nice times together while they're away
  

A few busy days, then a chance to relax

After I wrote my last blog update I went out to babysit for H. I look after her quite regularly, usually for an hour or two each time, so I expected similar on Wednesday. However, just as H's mum was leaving the house (at 7.30pm) she said "I'll be back around 11pm"! I don't mind sitting for H for longer spells as she's very well behaved and good at amusing herself, but I was a bit shocked as it was unexpected. And H's mum said she could stay up til she got back - H is only 10! But the evening went well, despite H being full of energy and me being very tired.

Thursday was a very busy day. I had an early-ish start for the orthodontist. While I was there I had a new bracket glued on to replace the one which had fallen off on Tuesday. I was a bit surprised though as I thought the bracket had fallen off a tooth at the bottom, but in fact it had fallen off a top tooth! And the man gluing the bracket on didn't give me much confidence in him, as after he'd set the glue he asked the nurse if she was sure it was a top bracket, because it looked like a bottom bracket to him!

At the orthodontist I also saw a surgical registrar about the 4 extractions I need. It wont be him that does them, but he reassured me that all the extractions should be straightforward, so I've opted to have all 4 done in one go with just local anaesthetic. He had my notes in front of him, but asked for my medical history, so he'd clearly not read them. I didn't know where to start! He said he could just look through my notes, but that would take him 5 minutes - I think it'd take a lot longer than that! Because I've had a liver transplant I'll need to have bloods taken a week or two before the extractions to check that my clotting is all normal. Initially a date at the end of August was suggested for the extractions as it was the earliest they could fit me in and it'd be convenient for me as it's after all my summer plans (British Transplant Games, America...). However, then while looking through my notes, the nurse discovered the date that my orthodontist had referred me to the surgical team. The hospital have a target to get patients seen within 18 weeks of their original referral and for me this 18 weeks will be up at the start of August. So they then tried to fit me in before the start of August, but they were very booked up and made it very clear I didn't want the extractions in the week before the British Transplant Games or the week before I go to America! So a date hasn't yet been fixed, but we'll receive a phone call from someone shortly who will try to fit me in before my 18 weeks is up, but I suspect it may not happen til the end of August. I'll let you know.

We were at the hospital for just over 2 hours, but once we'd finished there me and mum went to see some friends who live in that direction. Mum used to work with M and I've become very good friends with M's daughter, H. It seemed ages since we'd seen them, so it was great to catch up, even though I was very tired. When we finally got home after a busy day I enjoyed relaxing and watching The Apprentice that I'd recorded the night before while I was babysitting. I was happy at the result of that episode and am now really looking forward to the final 2 episodes. That evening I also watched Britain's Got Talent, which I watched all last week during the semi-finals. I enjoyed watching the final on Saturday night and was very happy that Diversity won as they were my favourite act :D

On Thursday I also received my new Filofax in the post, which I'm very happy with and have been finding very useful. And that evening I also got my fixed laptop back :D I didn't do much with it on Thursday, just surfed the Internet. I can't believe how fast it is now it's been repaired!

Friday was a more relaxed day, which was nice after a busy day on Thursday. I was also feeling very tired all day. In the morning I put all my files back onto my laptop and reinstalled iTunes. iTunes wasn't very happy though and although all my music and videos are fine, I seem to have lost 3 games which I'd previously bought from the iTunes store. And I took the opportunity to reorganise all my files and documents and get rid of old ones. I also set my mum up with a Facebook account on Friday! After lots of persuasion from me, Chris (my older brother) and a few of her friends, mum decided that she could use a Facebook account to share photos of her knitting! She's not learnt how to use it yet though. Chris came round for lunch, which was nice as although he only lives 8 miles away, we don't see him that often. In the afternoon I attempted to write an article for PINNT, a support group for people on artificial feeding who have been a big support to me in the past. I want to share my positive transplant story in their magazine to help others who might need a transplant. However I'm not yet completely happy with what I've written, so I wont send it off yet. And then Friday evening my friend Claire came round for tea, which was nice as she always cheers me up :)

On Saturday I was very tired again and had stomach ache on and off all day, so just relaxed for most of the day - watched TV, surfed the Internet, read, played on my Wii... I did manage to do something a bit more productive in the evening though :) I'm an active member on the Transplant Kids forums and have recently become a moderator for 2 sections of the forum. So on Saturday I made a start on improving one of the sections I'm now moderating (Kids Korner). All I managed to do on Saturday was to remove all the broken links, but I've got some ideas about what else I want to do with it over the next few weeks.

On Sunday I just did odd bits and pieces for most of the day as when I'm very tired I can't really concentrate on one thing for long. I was hoping my tiredness and concentration might have started to improve now my exams have finished, but I've seen no improvement yet :( And I had stomach ache again on Sunday, which didn't help my concentration. Chris and Sophie came round in the morning, but didn't stay for long. I tried some more high calorie drinks (chocolate fortisip and banana fortisip) but didn't like either of them. This summer I've set myself the task of decluttering and tidying my bedroom as I've got too much stuff and as a result lots of things live on my floor at the moment. Last week we got a charity clothes collection sack through the door that will be collected tomorrow (Wednesday) so I decided that was a good incentive to sort my clothes out. I just sorted through 3 drawers on Sunday, but almost filled the sack! I'm planning to sort out the clothes in my wardrobe today, but it's quite a formidable task! On Sunday I also spent quite a lot of the day just relaxing as I didn't have enough energy to do anything else, so I played on my Wii and DSi for a bit. Sunday evening we had a BBQ which Claire came round for, but I didn't have much of an appetite (as my appetite decreases when I'm very tired). However I did have some of Claire's yummy pudding (jelly with strawberries, raspberries, cherries and blueberries in it). For some reason, Alf (my younger brother) decided he'd have a shower at 11.30pm on Sunday night! So that woke my mum up and kept me awake for a bit, what a muppet!

On Monday morning I accompanied my mum to her physio appointment and then we went into town. Monday was the first day it felt really nice to not be at school any more, as the previous week had been half term, so everyone else was off school anyway. But on Monday it felt great :) In town I went to the opticians as one arm of my glasses keeps coming lose, even though my dad keeps tightening the screw up. At the opticians they just tightened the screw again and said to let them know if it came lose again, and they'd replace the screw. I also went to GAME in town and traded one of my old DSi games in, so I can get £8 off my next purchase :) When we got home I was quite tired, so relaxed for a bit. I treated myself on Amazon and bought the first series of Ashes to Ashes on DVD and Taylor Swift's Love Story Single (because one song on it - Beautiful Eyes - isn't available on iTunes). I haven't had much of an appetite recently, but really enjoyed tea last night. It was chicken, yellow peppers and mushrooms in a lovely sauce with rice. And very unusually for me, I ate all of my portion, finished off Alf's portion (as he didn't like it) and then had some more! Last night I really enjoyed watching Ashes to Ashes on TV, I think this series is better than the first. I'm a bit disappointed though that next week will be the last episode of this series.

Today I woke up early, so am quite tired as I had a late night last night. My weight this morning was the same as last week, so that's good. And when I emailed my dietician about that I also let her know which high calorie drinks I like best, so she can get me them on prescription. Surprisingly I managed to find 3 drinks I liked - Strawberry fortisip, neutral fortisip and vanilla clinutren :) I also received an email from Beverly this morning about the summer camp in America with more information. However, I've not responded yet because I'm really concerned that I might not be well enough to go. I need to have a think about it and probably a chat to my parents and see what we think, as I really don't want to miss such a fantastic opportunity, but need to consider my health. I also received my first letter from the local M.E. unit this morning along with quite a big questionnaire about my symptoms, my past medical history (eek!), my emotions... They can't put me onto their long waiting list until they've received the completed questionnaire, so I'm going to try to fill it in this afternoon so I can get it back in the post to them ASAP. On a more positive note, my Mika tickets arrived in the post this morning :D I can't wait til me and mum see him in concert again on Monday - I'm so excited! I loved his album 'Life in Cartoon Motion' and his new record 'Songs for Sorrow' is growing on me with each listen. I'm hoping that he'll play some old favourites plus some new material at the concert.

My week so far

On Sunday I had quite a busy day. In the morning I babysat for H and we had fun playing on her Wii together, but again I had an achy arm the next day! Then me and mum went to a local carboot sale for a look round. The weather was very hot, so we didn't stay long as I'm not very good with the heat. But I covered myself in factor 50 sun cream, as the steroids I'm on to prevent my transplanted organs rejecting mean I have to be careful in the sun. At the carboot sale I picked up some bargains, including The Da Vinci Code and Willy Wonka and the Chocolate Factory on DVD for just £2 each and some lovely earrings for just 50p :D

Then Sunday afternoon my nan had quite an adventure! She lives in a neighbouring village about 4 miles away and has always been very independent, but currently has mobility problems because a few years ago she badly broke her leg and it never mended properly. So to help her gain back some independence she bought herself a mobility scooter and has been practising up and down her street with it. However, my nan has never driven a car, so it's taking her a while to get the hang of driving a mobility scooter. On Sunday my dad cycled over to see her and brought her back to our house on her mobility scooter! She managed really well, despite it being the first long journey she'd done on her scooter and it being a really hot day. It did take them about an hour and half to cover 4 miles though! So it was nice to see my nan that afternoon, even though I was feeling quite tired after a busy morning. She enjoyed seeing my May Ball photos and I showed her Holly's Battlefront programme. And me and my parents visited her again on Monday afternoon to check she was ok after her expedition (she drove back home on her scooter as well on Sunday). She was fine, just a bit tired!

Sunday evening I enjoyed watching the first semi final of Britain's Got Talent, and I've been watching the rest of the semi finals this week. This is the first series I've watched of Britain's Got Talent, but I'm enjoying it. I think out of the 6 acts that are through to the final so far, Diversity are my favourite :) But I may change my mind as the week goes on.

From Sunday evening for a couple of days my hands were very irritated, my knuckles were red, dry and very very itchy. I'm not sure why, but assume it could have either been the sun from being outside at the carboot sale on Sunday morning (although I did have sun cream on) or possibly an allergy to the soap I used in the toilets there. Luckily it seems to have cleared up now though.

On Monday I was very tired from a busy day the day before, so spent most of the day just relaxing -reading a good novel, listening to my iPod and watching TV - I love Ashes to Ashes! :D That morning I decided I really ought to start keeping my own diary, rather than relying on my Mum to keep track of everything for me. So I ordered a lovely purple filofax from the Internet and am hoping it should arrive in the post tomorrow (Thur). It was quite expensive, but I know filofaxes last for a long time as my mum has had hers for around 20 years!

I tried another high calorie drink on Monday, but it was disgusting. It was supposed to be strawberry juice, but didn't taste of strawberries at all, which was very frustrating! Very excitingly though, on Tuesday I finally discovered a high calorie drink that I liked, which was like strawberry milkshake and did actually taste of strawberries :D It was called Fortisip Strawberry Flavour for anyone reading this who has experience with high calorie drinks! And today I found another drink that I don't mind, like a neutral milkshake (called Fortisip Neutral), so I'm feeling much more positive about the drinks now :) And my weight this week was a little lower than last week, but it often fluctuates a bit from week to week, so I'm not worried. In response to Cat's comment on my last post, I have tried Vanilla Scandishake and think it's ok, but prefer normal cow's milk. I'm going to give the carton drinks a try, but knowing I can fall back on Vanilla Scandishake if neccessary.

On Monday evening I was brushing my teeth and I felt something in my mouth. To my shock I discovered that it was one of the brackets from my braces, which had fallen off my tooth! So Tuesday morning I rang the orthodontist to ask their advice. I'm due to see my orthodontist on June 5th to have the wires on my braces tightened, but on the phone it was suggested that I should get my braces fixed sooner. Luckily tomorrow (Thur) I'm at the orthodontic department of the hospital for my initial meeting with the orthodontic surgeons about the 4 teeth extractions I need, so they will try to fit me in to have my braces fixed while I'm there.

A little while ago I mentioned to my consultant at hospital B that it looked like I'd need some teeth removed for my orthodontic treatment, so he gave me a copy of a document from the hospital with details of antibiotic cover required when small bowel or liver transplant recipients need dental treatment or other small surgical procedures. I read through this document earlier in the week in preparation for seeing the orthodontic surgeons tomorrow, and the wording of it suggested that I wouldn't need any antibiotics, but I thought I'd best check this with my consultant, Dr G, at hospital B. So I emailed him about it, but got an automated reply saying he was out of his office until 1st June. So I rang the liver unit yesterday and one of the liver nurses said she's ask another consultant who knows me, what their advice would be. I heard back today that they'd like me to have antibiotic cover for the extractions, but it'll just be one tablet. And they thought that the document was worded wrongly, so they're going to rewrite it to make it clearer!

About a month ago my friend Cat told me about the CEA cinema card. If you are receiving disability living allowance, you can buy a card for just £5.50 a year and it allows someone to accompany you for free to participating cinemas. I receive disability living allowance and often visit the cinema, so I sent off for a card about a month ago and it came in the post a week or two ago. So last night me and my mum tested the CEA card out at our local cinema, and it was accepted with no problems. Thanks Cat :D We saw Coraline 3D and it was fantastic, I'd highly recommend it. It's advertised as being a children's film, but I thought there was lots in it for adults too. The story was very original and the animation was great. The 3D effects were good too :)

Today I took my laptop into the shop where H's dad works and he said he'd have a look at it for me. My laptop has just been really really slow, taking between half an hour to an hour to turn on, and then taking ages to do even the simplest things. H's dad soon gave me a ring and said he'd worked out what the problem was. Apparently the hard drive was very scratched, which just happens sometimes to computers with age (mine is nearly 4 years old) and that explained why it was so slow, because apparently the scratches had damaged Windows. But it can be fixed by installing a new hard drive and reinstalling Windows, which is great because I thought I might have to buy a new laptop! It'll cost £95, but that's ok, as it's much cheaper than buying a new computer. And H's dad will fix it for me tomorrow when he gets the hard drive and will drop it back here tomorrow evening. I'm really looking forward to having my laptop back working again and not having to share the family computer any more :D

This week I've also made a start on clearing out and tidying up my room as that's a big formidable task I'd like to get done over the summer - it's quite a mess at the moment because I have too much stuff! Yesterday I only managed to sort out one drawer, but it's a start! Planning to try to do a bit everyday :)

The rest of this week looks quite busy. I'm babysitting for H again this evening and then hopefully I'll be back home in time to watch The Apprentice. If not, then I'll record it, but I'll have to try to avoid all media til I can watch it tomorrow, as I wont want to know who was fired! Tomorrow I'm going to the orthodontist in the morning (for my appoinment with the orthodontist surgeon and hopefully also to get my braces fixed) and then might be meeting up with a friend that afternoon. Friday and Saturday I'm looking forward to relaxing :D And Sunday evening me and my parents are going bowling with my friend Claire as I need to get some practise in before I compete at the British Transplant Games this summer! From next week I don't have as much planned though, so hopefully I'll be able to rest and relax a bit. I don't feel any less tired yet since I've finished school, but I'm hoping I might start to feel a bit better with time and rest. Fingers crossed.

In response to Cat's comment on my last post I still don't really know what kind of career I'd like. At the moment I'm really enjoying helping out Holly a bit with her Battlefront campaign, chatting to others who've had transplants like mine on the TK forums and Intoto and I'd like to get more involved with Live Life Then Give Life because I think the work they do is great. So I wondered about some kind of career or job related to raising awareness of organ donation or supporting others who are waiting for or have received transplants, but I don't know what there is in that area. Or maybe a career in journalism or working with children. Not really sure yet.