Little Boots concert :D

The concert was fantastic :D I've been looking for photos on the Internet from our concert (as I couldn't belive the amount of people taking photos and videos on their phones and cameras) but couldn't find any. However I did find some from an earlier date in the same tour which you can see here. As you read through this blog post you'll find references to photos you can find in that link :)

We got to the venue 15mins before the doors opened and although there was already a queue it wasn't very long when we joined it. The venue was very small and intimate, but had fantastic acoustics. We managed to stand quite near the front. We weren't in rows as such, but there were only 2 or 3 people in front of me, so I was very close! And I could see :D I did have to stick my elbow in a big man next to me a few times as he kept pushing me out the way and then when that failed I just slipped in front of him :P I'd never stood before at a concert before, so was quite nervous about that. I hadn't realised that my claustrophobia would be a problem and I did feel quite claustrophobic at times, but I coped. And the venue was much hotter than I expected as it took ages for the air con to start, so I'd gone all wrapped up in loads of layers (poloneck with a t-shirt on top and then a hooded jacket on top of that), but went to the toilet to strip down to just a t-shirt! As for being on my feet for so long, I managed but it was hard. As I wasn't used to it, all my muscles (feet, legs, back, shoulders and neck) started hurting about half an hour into my standing. And I had to stand for 4 hours in total, owww! I did manage to stay on my feet though, but wouldn't do it again as I didn't realise it'd be that painful! :P

The reason I had to stand for so long is because there were 2 support acts on first and the stage had to be re-set up between each act, so I'd been standing for 3 hours by the time Little Boot came on stage! The first support act was Erik Hassel who was from Sweden. I didn't really like his music though. The second support act was Ellie Goulding who was really good. I think she's going to be huge. It was a shame that the instruments drowned her vocals out a bit though. You can see her in pictures 1 to 7.

Then eventually Little Boots came on! You can see her in pictures 8 to 15. And it was worth the wait because her performance was amazing :D For those of you who are familiar with her album 'Hands', she played all the tracks from that apart from 'No Brakes' and also performed a brand new track that wasn't even finished yet called 'Echoes'. Her voice was great live and as well as singing she also played lots of musical instruments - I counted at least 6! See pictures 10 and 15 for one of her stranger instruments called a tenori-on! I sang along to most of the songs. And Little Boots involved the audience with clapping in songs and seeing if we could sing key parts louder than Liverpool had :D

Little Boots wore some fantastic outfits too. Her tour is called the Skull of Dreams tour, so she had a big black skull with flashing eyes on stage with her! She started off wearing a shiny silver hooded cape and then took that off after the first song to reveal an amazing black and silver outfit (see picture 9). Later on she wore an white jacket over the top of it made of small-ish 3D pyramids. And towards the end she wore a white dressing gown before taking it off to reveal gold wings on her sleeves! And she had really long false eyelashes (which you can see in the photos) that I later discovered through one of her blogs on the Internet take her at least 4 attempts to put on each time, lol.

I bought a great Little Boots black tour t-shirt, which has her name as a simple logo on the front in sky blue and white and then her tour dates listed on the back :D

Me, mum and Claire all had a fantastic night :D :D :D

Save Jess-tival photos

The fantastic Holly C (you can read her blog about her health and her life here and read more about her photography here) took some amazing photos at Save Jess-tival and you can see them here. There are a lot of photos of the team setting up during the day, but if you want you can click here to start viewing the photos from the actual performances on the night. Enjoy! :D

X Factor, Little Boots and Alicia

After reading back through my last update I can't believe that I didn't mention the X Factor! I like Joe best, closely followed by Lucie and Stacey. I can't stand the twins and don't understand what the general public must be thinking in voting for them! It's a singing competition and the twins can't sing, so therefore they ought to have gone out ages ago. I don't think it's fair that acts that can sing (such as Miss Frank, who I really liked) are going out while the twins are staying in the competition. And I was shocked to hear that apparently the twins received the most votes last week and are fast becoming favourites to win the whole thing! What a joke! Grrrr.

I've had trouble getting up this week and most morning I've had a lie-in til between 10.30 and 11.30am because I've just not been able to get out of bed when my alarm has gone off at 9.30am. My nocturnalism hasn't been too bad with me getting to sleep between midnight and 1am so far this week. Last night I attempted to get an early night by getting into bed at 11.30pm, but I didn't fall asleep til just before 1am. And I've been having quite disturbed nights with vivid dreams and waking up often for no reason, which is frustrating.

I felt very exhausted on Monday and was very fed up with it. Luckily I felt quite a bit better on Tuesday (with no tummy aches!) which cheered me up :D I had a bad headache that evening but luckily it cleared up quickly after taking some Paracetamol. And I've not felt too bad yesterday and today either, apart from being tired.

I had lots of trouble on Monday evening with my NG tube tape. The tape I've settled on using doesn't make my face sore but does usually partially come unstuck at somepoint during the night. However on Monday evening my tape fell off 4 times in three and a half hours before I even got into bed! Grrrr. I eventually worked out a more effective way to secure my tube using an extra piece of tape stuck down over the horizontal piece that prevents the horizontal piece from coming off my face due to the springiness of the tube. This isn't ideal though, so I've taken a recommendation from a friend about a different type of tape to try and I've ordered that from my local surgery. Fingers crossed.

I weighed myself on Tuesday like I do every week and I was expecting to have lost a little bit of weight (due to eating less because of having a sore mouth after my orthodontist appointment last week), but it was nice to discover that I'd only lost 0.2kg. I contacted my dietician via email and she said to continue on 5 nights of feed this week and then we'll review it next Tuesday.

I made a start on filling out my ESA medical questionnaire on Tuesday evening, but only did the easy bits then. I'm hoping to finish it this weekend but it's tricky and frustrating.

I heard from J, the psychologist at Hospital B, earlier this week with an appointment time to see her on the afternoon of the 11th November. Fingers crossed she'll be able to help my ME, so I'm feeling quite optimistic about seeing her. I'll let you know how it goes.

On Monday morning I put my watch on that my dad had put right for me the previous evening. It was showing the wrong time again! Grrr. So I've gone back to my old (and not nearly as pretty) watch for now and am hoping to revisit the little craft shop where I got my watch from soon to see if they've got another one in stock. If so I'll definitely check that I can adjust the time easily before buying it!

I've had quite a busy week so far. On Monday I met Claire at a local shop that was originally a garden centre but has now expanded and sells all sorts of things including art and craft materials, food, pets, clothes, books... We had a nice browse round and I completed my Christmas shopping! I also bought myself a rubber stamper which says 'Happy Birthday' so I can use that when I feel up to making birthday cards. And we had lunch in the cafe there. I was shocked to see a flashing sign telling me how many days til Christmas in the shop! And they had loads and loads of Christmas stuff for sale, it's not even November yet! I know I've done my Christmas shopping already but that has been my choice, I don't want to see Christmas trees etc in the shops in October! That's not right, lol. And then on the way home me and mum called in at Sainsburys for a big food shop.

Tuesday morning I tidied up my bedroom while listening to Mika really loud :D Then my old friend F came round for lunch and we chatted a bit and watched 2 DVDs together that afternoon :D We watched A Cinderella Story which I thought was very predictable and the characters were too over the top, they were like charicatures. It was ok to watch, but I wouldn't watch it again. And we watched Wild Child which I've seen before and really like :) And we've arranged another date to meet up because F couldn't stay for as long as she wanted to on Tuesday due to having a saxophone lesson that afternoon.

And yesterday I went into town for a couple of hours. I sorted out some confusion with my bank and enjoyed browsing round the shops. I was on the look out for some thick leggings, but the only ones I could find were very thin and I want thicker ones to keep my legs warm. So hopefully I'll be able to find some thicker and warmer leggings when I'm next in the city. I only spent £1.50 while we were out on a book from a charity shop. It's called The Likeness and is by Tana French. I've read it before and will definitely reread it now I've got a copy. I'd highly recommend it :) And then I helped mum with another Sainsburys shop. Neither of us can understand why we needed so much just 2 days after doing a huge shop, lol!

Last night I received a phone call from my best friend Lizzy (who I went to stay with in August) asking if I'd like to go and stay again before Christmas. My health isn't as good now and Lizzy is working more, so I'm hoping just to stay for 1 night this time, rather than 2 like I did last time. I need to work out lifts with my parents (hopefully I'll be able to get a lift there and then come home on the train like I did last time) and then I can phone Lizzy back and confirm to stay either the weekend of the 7th and 8th of November or the weekend of the 14th and 15th November. So that's not far away at all and is something to look forward too :D

I seem to have watched loads on TV over the last couple of days, lol. I recorded BBC Breakfast on Monday because they were interviewing Diana Vickers about the Rise and Fall of Little Voice. Last week I discovered a programme called Medical Emergency that is on Sky 3 every day and this week they followed a lung transplant story. So hopefully lots of people will have seen that and it will have got them thinking and talking about organ donation. I've also watched An Island Parish, The Gadget Show, Never Mind the Buzzcocks, Film 2009 and The Force. And I caught a programme on the music channels containing and interview with and performances by Alexandra Burke and another very interesting Horizon, but this was about the use of stem cells to help medical conditions and disabilities.

I've been listening to my Little Boots CD a lot this week in preparation for the concert tonight! I'm very excited :D Claire is coming round for tea and then me, mum and her will set off to the city for the concert, yay, can't wait :D Will report all about it tomorrow or at the weekend :)

Today although I'm very excited about tonight's concert, I'm also taking time to remember an inspirational little girl I met at Hospital B when I had my transplant, called Alicia. Alicia had her first multi organ transplant when she was just a baby, but required a second one when she was 10. Unfortunately her second transplant also failed and Alicia lost her fight for life 2 years ago today. Alicia was amazing, she was always smiling and making those around her laugh. She'll never be forgotten.

Alicia and her mum

Ask Me Anything Answers - Part 3

And here is the third and final part of my Ask Me Anything answers. You can read part 1 here and part 2 here. I've really enjoyed answering all the questions, so thank you to everyone who asked one or more :) I hope you've enjoyed reading my answers :)

Emma asked a few questions :)
'Was the decision to go for transplant an easy one?'
Yes it was for me. Everyone's circumstances are different, but I was aware that without a transplant I would die (and probably within months), but a transplant would give me a 60% chance of survival. So it wasn't a hard decision for me. However I have 2 friends who are on TPN like I used to be and have been recommended small bowel transplants. For them though it isn't a matter of life and death, but a transplant would probably improve their quality of life. That must be a much harder decision. One of my friends is really struggling with that decision because she lives for her animals. But animals are a big risk after transplants because of the immunosuppression. So if she chooses to have a transplant her health will improve and she'll have a better quality of life, but she'll have to give her up animals which mean so much to her. If she chooses not to have a transplant she will be able to keep her animals but will have a poor quality of life. What a horrible choice to have to make.

'Is your outcome better or worse than average (or it's hard to say)? You've written about a couple of people needed second transplants and I was wondering is that common because the organs only last a certain length of time?'
I think my outcome is better than average for small bowel transplants. Rejection is a very common problem post transplant, but is usually treatable. 90% of small bowel transplant recipients have rejection in the first 6 months post transplant and 98% have it in the first 2 years post transplant. So I'm very lucky to be in that tiny 2% who don't have any rejection in the first 2 years and I've still not had any to date, fingers crossed. Although rejection is often treatable, it isn't always and chronic rejction can lead to someone requiring a second transplant (which is the reason for most of the children I know who have needed second transplants needing them). It isn't a time thing with the children I know who need second transplants, because none have them had their transplants more than 4/5 years ago, whereas the first successful small bowel transplant recipients are now 10 years post transplant and their transplanted organs are still working. Because small bowel transplants are relatively new there aren't any recipients that are more than 10 years post transplant, so it's not yet known how long small bowel transplants will last for. Other organ transplants don't last forever though, so it's likely that small bowel transplants will have a lifespan, but it isn't know what yet.

I also had quite a good chance to start with because I'm not of an ethnic minority and am almost adult sized, so I stood a good chance of getting my transplant in time. Organs from ethnic minorities are much rarer (ethnic minority translant recipients need ethnic minority donors) and the smaller the child the smaller the range of organs that would fit them. Children need organs from donors similar in size to them, whereas I was big enough for adult organs.

I think people need to be aware that transplants aren't a cure, they're swapping one set of health problems for another lot, but hopefully the new lot won't be life threatening. I'll need to take anti-rejection tablets for life and will always have a risk of rejection.

'What's the best and worst things about having been transplanted?'
The best thing about having received a transplant is that I'm alive now and have a future ahead of me. Without my transplant I wouldn't have survived. And being able to plan my future is great :D I also really like being able to have more freedom and independence now.

Trying to think of a worst thing is difficult. I guess the fear of rejection and possibly needing a second transplant sometime in the future will never disappear. There are some inconveniences too, such as hospital clinics and inpatient stays for tests and having to boil all water before drinking it, but they're such a small price to pay. One thing I'm having more difficulty with than I expected is eating. I assumed that after my transplant I'd be able to eat and that would be that. But it's more complicated than that because I still don't feel hunger and rarely enjoy eating, but I have to make myself do it. That can be tough.

'Your username is bookworm molly, so what's the last book you read? And your favourite book ever?'
I used to love reading, but really struggle with it now because my concentration is poor due to having ME. I find magazines much easier to read at the moment. This week I read the latest issue of the Official Nintendo Magazine. The last book I flicked through was a funny little one I've got called 'The Coffee Table Book' and is exactly that. Each page contains a postcard from a different person about what makes them happy. The last novel I think I read was called 'Gifted' by Nikita Lalwani, which my mum recommended to me. But that was a couple of months ago.

My favourite book ever is a difficult question. I can't just choose one, but I love 'Before I Die' by Jenny Downham, 'My Sister's Keeper' by Jodi Picoult, 'The Girls' by Lori Lansens and 'Memoirs of a Geisha' by Arthur Golden. I'd highly recommend all of them if you've not read them :D

'What's your favourite colour?'
Purple :)

'And what's your one life long goal that if you achieve it you'll know you've done what you were supposed to or what you always wanted to?'
That's a really hard question. I know this probably sounds cliched but I think it would be being a mum :D And I'd quite like to have a book or piece of writing published too :)

Lou asked a few questions via Facebook :)
'What is your greatest fear?'
Death. And I'm also claustrophobic, which has caused problems in the past when I've needed MRI scans.

'What did you want to be when you were a little girl?'
A teacher I think. I remember how I used to play schools with my friend when I was little :) I know I never wanted to be a ballerina though - I had one lesson when I 5 because all my friends did ballet and I refused to go back, hehe.

'If you could only take 5 things in a suitcase on holiday, what would they be?'
Ok, my sensible head says that would have to be my tablets, sterile water (for the journey), my passport, money and my phone. But luxury things would be my iPod, my phone, my laptop + an Internet connection, my camera and my mum :D

'What is your most annoying habit?'
Picking my lips when I'm nervous or bored.

'If you could meet any celeb, who would it be and why?'
Mika :D Because I love his amazing music, his creative music videos and album booklets, his energetic live performances, his great personality...

'What one item of makeup could you not live without?'
The only make-up I wear is nail varnish, so that's quite an easy question for me. It's got to be my dark purple nail varnish - I love it :D

Ask Me Anything Answers - Part 2

This is part 2 of my Ask Me Anthing answers. Part 1 can be found here, so if you missed it please have a read and leave a comment. Part 3 (the final part) will be posted up tomorrow evening :)

Becky asked a few questions :)
'Have you ever had the 'why me'/'it's not fair' feeling about your transplant/tiredness?'
Of course, I don't think I'd be human if I hadn't thought that at points. I would assume I had that feeling at points before my transplant, but was so ill at the time that my memories from that period are quite patchy. I don't remember having it before my liver failure though when I was on TPN, because that was all I'd known so I just coped with it and didn't question it.

I have definitely had that feeling about the ME though. After having health problems for pretty much all of my life, once I'd had my transplant and recovered from that I'd definitely hoped that that would be the end of it all. I had about a year of fantastic health after I'd recovered from my transplant before I developed ME. It's more frustrating than anything else because now I've had the transplant I just want to get on with my life, but the ME is getting in the way of that. I do try my best though not to let it stop me, but it's difficult.

'Did your friends in sixth form know about your transplant? If not (I have a feeling you said that they don't somewhere, although I may be imagining that!) why didn't you want to tell them, and has in been difficult to explain hospital trips/tablets etc? If you did, how did they react to it?'
When I started at sixth form I made the decision not to tell any students about my transplant. I let my teachers know though for safety reasons just in case something happened when I was in their lessons. I decided not to tell any students because I wanted a fresh start and didn't want sympathy or to be treated differently because I'd had a transplant, I just wanted to be normal. I'd never had that chance at my previous secondary school as the jaundice from my liver failure couldn't be hidden and felt I was treated differently because I was ill. I'm also quite a private person and knew that I might tell some friends at somepoint, but if so it would have to be people I trusted, I didn't want everyone to know about my health. And at the start of sixth form I didn't know who I could trust and who would be my closest friends. As sixth form progressed I wondered if I'd made the right decision and did wonder about telling friends sometimes, but didn't know how I'd do it and how I'd explain why I'd not told them before.

My consultant, Dr G, at Hospital B understood how important sixth form was to me, so always did his best to arrange my clinic appointments and inpatient stays during school holidays so I didn't have to miss much school at all. And if I did occassionally have to miss a day of school I just said it was for a dentist appointment or said I'd had a cold or something. By the time I started sixth form 10 months after my transplant my tablets had decreased significantly and so I only had to take them twice a day, which I did in the car on the way to school and in the evenings, so no-one ever saw me taking tablets at school. Sometimes it got a bit tricky when friends were discussing their year 11 proms as I'd not attended mine, but I just made out that that was my choice, rather than admitting that I'd not been well enough. And discussing GCSEs was interesting as I'd only got 6. But I just admitted that I'd been ill then (and in other tricky situations) and no more questions were asked.

My holiday to Florida in March 2008 was granted for me by the Make-A-Wish foundation. However I just told friends that it was a family holiday and didn't mention Make-A-Wish's part in it. For my birthday later that year though I asked for donations to the Make-A-Wish foundation instead of presents, so wasn't sure how to explain that to my school friends. I explained to a couple of my closest friends, who I thought might want to get me something for my birthday, that the Make-A-Wish foundation had organised the holiday for me because I'd been very ill before I came to sixth form and left it at that. My friends were fantastic in not asking any further questions, I think they knew that if I wanted them to know more then I would have told them, and they respected that.

The hardest thing to keep hidden was my illeostomy which I had until the summer between year 12 and 13, so I had that for a year of sixth form. I managed though, but it could make some loud noises in quiet lessons and needed me to leave lessons sometimes to empty the bag.

I decided to tell my closest friend from sixth form, C, last Christmas when I went to her house during the holiday as we would be going to Japan together so I thought it'd make things easier if she knew. And I definitely trusted her. She took it really well. She understood why I'd not told her before or told anyone else and she was really pleased that I trusted her enough to tell her and that she was the first person from sixth form that I'd told. And she said she wouldn't tell anyone else and I knew I could trust her. I think that definitely made our friendship stronger and it also meant I didn't have to hide anything from her any more.

It was interesting going to Japan because I had to get my four 1 litre bottles of sterile water through customs (to drink on the plane journeys because I can't drink normal tap or bottled water). I had a medical letter so we didn't have much trouble, but I'm sure some of the students in our group wondered why :P No-one asked me anything though and so I didn't tell anything. In Japan I was sharing a room with C, another friend A and another girl. I took my tablets, boiled up my water etc and no questions were asked by the 2 girls who didn't know about my transplant. I did tell A part way through the trip though because I trusted her and thought she deserved an explanation. She took it much more matter-of-factly that C had and just accepted it with no questions or anything. I never told the other girl in our room anything though because I didn't feel I could trust her.

I also tried to keep my ME hidden at first, but that was much harder as it affected me much more day-to-day than my transplant had. C was the only friend I told about that while we were still at sixth form, but I did announce it to all my friends on Facebook as soon as I got a diagnosis (August) though because I was tired of keeping secrets and keeping things hidden. I have also quite recently mentioned my transplant a couple of times in my Facebook status because, like I said, I don't want to keep things secret any more. And also when I wrote in my Facebook status about the need for more people to sign the organ donor register I thought mentioning my transplant might make my friends more likely to sign up.

I'm almost completely comfortable telling people about my ME now but am still a bit cautious when telling people about my transplant. I have to get to know them first, I wont tell strangers. I told a friend I met through an ME forum on MSN a few weeks ago and he took it really well. And telling him my story persuaded him to sign the organ donor register :) I chat to a few people on ME forums at the moment and one of them asked me last week what I'd been ill with in the past, because I'd mentioned I'd only got 6 GCSEs due to illness. I wasn't sure whether to tell her anything or not because I don't know her very well. But I did and then asked her to consider joining the organ donor register. She is finding out more about organ donation at the moment and has been talking to her family about organ donation :)

'Can you stay anywhere other than your house (eg. friends' houses, relatives) with the NG tube/other medical things and abbreviations that I forget!'
Don't worry about remembering all the medical terminology Becky, I only know it all because I've grown up with it, so I don't expect you to remember it all :)

Before my transplant I was on TPN 7 nights a week. I went on 2 school trips with primary school (when I was 9 and 11) and my dad just came with me as a parent helper and he helped me sort my TPN out too. Instead of staying in the dorms with everyone else me and dad just had our own room.

When I was at secondary school sleepovers were very popular and I didn't want to be left out. So I took my TPN to sleepovers as the pump and feed bag fitted into a small ish rucksack. It was very heavy though as each TPN bag (I had one a night) contained 2.5 litres of TPN! Beforehand my mum would visit my friend's mum, check them out and if she was happy for me to sleep there (which she always was) she'd explain everything to the mum. Then the sleepover would go ahead as I could do all my TPN myself by that point. I'd get connected at home as that needed to be done under quite sterile conditions and then go to the sleepover with my rucksack. In the morning I'd disconnect myself at my friend's house. I never had any problems apart from one morning when the cap on the end of my central line cracked and so blood started coming back though it! I wasn't worried though as it'd happened before (but always at home) so just clamped the line and rang my mum who came with a new cap. It gave my friend and her family a shock though, lol! And those sleepovers were sometimes with up to 8 of us :D My friends were so accepting of it all though and I remember once I was allowed to try just 6 nights of TPN a week giving me a night of freedom. So on one of those nights of freedom I went to a sleepover without my TPN which I was very excited about. My friends didn't even notice the difference though so that shows how accepting they were of my TPN.

Since my transplant I've not stayed away anywhere with my enteral feed, but could do if I wanted to because it's so much easier than TPN (doesn't need sterile conditions to set up and disconnect). Because my enteral feed is more flexible than my TPN (I can go without it if I want to some nights) I stayed with my best friend Lizzy for the first time in August, but just didn't use my enteral feed the 2 nights I was away. I'm hopefully going to stay with her again soon, so will probably just have 2 nights off enteral feed again if I'm not completely off feeds by then. And I didn't need feeds when I went to Japan, which made that all a lot easier!

Tablets have never been a problem because I've sorted them all out myself from quite a young age, so can manage them fine on my own when I'm away from home.

And I've been on family holidays all my life as when we holiday in the UK the delivery company will deliver the TPN or enteral feed to wherever we are staying. We even got TPN delivered to Holland once I think. And when we went to Florida last year I had some nights off enteral feed but still needed it every other night, so we just got cleared for excess luggage and took the feed with us :D

'Do you have any plans to study more?'
I'm not sure. See 'Would you like to study at university?' here for more details. I loved studying before I became ill pre transplant and studying was everything to me. But since my transplant I've not enjoyed it as much but I don't know if that's because my priorities have changed/because I'm older/because the subjects have become more advanced... If you'd have asked me this before my transplant I would never have doubted that I'd go to university to get a degree, but now it doesn't seem as important to me.

'Favourite Pixar Film?'
Quite a tricky question, but probably Monsters Inc :)

And although this wasn't asked I've been thinking about my favourite film recently. I can't decide on just one, but think I could probably pick two - Little Miss Sunshine and Juno :D If you've not seen either/both of them, then I'd highly recommend them :)

'Favourite Mika Song?'
That's a mean question making me choose just one! I love so many of his songs. But if I had to choose just one favourite Mika song I think it would have to be 'Blue Eyes' from his Songs For Sorrow CD and The Boy Who Knew Too Much album. I can't help singing along when I hear it as it's so catchy and it's the song that brings back most memories from the Songs For Sorrow acoustic concert :D And my mum loves it too so we often dance around the room to it :D You can listen to it here if you click on the play button in the player in the top right. I think it's best listened to loud :D

However I'm currently also really enjoying listening to 'Good Gone Girl' from Mika's latest album, The Boy Who Knew Too Much, and think that it might be challenging 'Blue Eyes' for my favourite Mika song! You can listen to it here.

Ask Me Anything Answers - Part 1

I've now answered all of the Ask Me Anything questions, but because I've written loads I think I'll split my responses up into a few posts, so as not to overwhelm you :) I've answered the questions in the order I received them. This is part 1 and there will probably be 3 parts in total :D

Emma asked 'How many tablets do you take each morning and night?'
When I first came home after my transplant I had to take over 80 tablets each day, but now I don't need many at all :) Currently I take 5 tablets each morning and 4 tablets each evening.

Every day I take:

• two 1mg Tacrolimus capsules and one 5mg Prednisolone tablet - which are my immunosuppressants that I take to prevent rejection
  
• one 2mg Loperamide capsule - which slows down my gut because my transplanted small bowel doesn't have all the nerve connections that a normal small bowel would have, so peristalsis (the action of pushing the food along using muscle contractions) doesn't occur
• one 25mg Losartan tablet - which helps to keep my blood pressure low as high blood pressure can occur as a result of the Tacrolimus and can damage transplanted organs, I think
• two 300mg Ursodeoxycholic Acid tablets - which regulate the bile flow in my transplanted liver
• two 150 microgram Cerazette tablets (a progesterone only version of The Pill) - which I take because I have an ovarian cyst, which isn't transplant related
  

I will be on Tacrolimus, Prednisolone, Losartan and Ursodeoxycholic Acid for life. Hopefully I won't need the Loperamide and Cerazette forever.

Jessica asked a few questions :)
'What was your favourite subject at school?'
Through primary school and secondary school my favourite subject was maths. I loved the way that it was very logical and answers were either right or wrong, with no grey areas. I took a higher paper in both my year 6 and year 9 SATs and sat my maths GCSE a year early (year 10 instead of year 11). As well as having maths lessons at school I also had a private tutor from the end of primary school until I became ill before my transplant, because I enjoyed maths so much. Just before I got my tutor my parents asked me what I'd like to do for a hobby. Did I want to have horse riding lessons like some of my friends? I said I'd like to have extra maths lessons, lol!

When I began the International Baccalaureate I started off doing higher level maths, but I hated it. I don't know what had changed, but I couldn't keep up with it and couldn't see the point in it. It was all theoretical and none of it could be applied to anything. So I dropped down to standard maths and then when I decided to drop one of my six subjects after developing ME and struggling to keep up, it was maths I dropped because it was the one that I was getting the lowest grades in and enjoyed the least.

In sixth form I was very lucky to have the chance to learn Japanese and that quickly became my favourite subject. It was quite a challege as I'd always struggled with learning languages before (French for a few years at primary school and German for 3 years at secondary school) and Japanese was especially difficult with 3 different alphabets. But I loved the challenge. I was always much more confident with reading and writing Japanese rather than speaking it. I've not studied Japanese since I finished sixth form back in May, but have kept all my notes and hope to continue learning Japanese at some point in the future.

'Do you have any particular jobs in mind?'
I quite like the idea of being a journalist in theory as I enjoy writing, but sometimes struggle with the imagination aspect of it, so I think journalism might be quite a good job for me. I think I work well with pressure and deadlines (when my health is good), but probably need to look into getting some work experience in this field before deciding whether or not that is where my future career lies.

And I quite like the idea of working with children too, but I'm not sure in what job. I've considered primary school teaching, but am aware now that there is lots and lots of paperwork involved which the teachers I know don't like at all. I can't imagine I'd like working in a nursery with so many children as it sounds quite hectic. Hmmm. My Mum has a friend who is a Nanny, which I quite like the sound of, so I might quiz her a bit about that. Again I think I need to get some practical experience first.

'Would you like to study at university?'
The only subject I can see myself studying further is Japanese. I think that you have to really enjoy a subject to study it solidly for 3 years and the only subject I really enjoyed at sixth form was Japanese. When I was considering going to university I went to visit one of only a few universities which offers Japenese at degree level. The course sounded fascinating but it also sounded like a lot of work. It was then that I realised that I wasn't well enough to go straight from sixth form to university. I'm still not sure about whether I will go to university when I'm better or not. I can be sociable, but sometimes I just prefer to be alone and the idea of being surrounded by other students 24/7 at university scares me a bit, lol. It's not something I need to think about now though, so I'll see how I feel when my health is a bit better. If I do go to university in the future I think it will be to study Japanese.

'Where do you see yourself in 10 years time?'
This is hard! I'd like to be in a relationship that I'm happy with. Marriage isn't important to me though. I'd like to have a child or two, or be considering having children. And I'd like to have a dog. I'd like to be healthy and not have to worry about my health. I'd like to have a job I enjoy, but I don't know what it might be yet. I'd like to have travelled more, but ideally be living in or very close to London :D

'Where did you get your haircut?!'
I've answered this in the comments on this post :)

'Do you have any pets?'
No unfortuntely :( I've had pets in the past - my dad had a border collie when he met my mum and she survived until I was a baby, we had 2 cats when I was small but they both ran away one week after the other, I got loads of stick insects from the school science department when I was in year 7, I had a hamster when I was about 12 I think and we had a cat when I was about 13 but he ran away. So we've not had much luck with pets in our house, don't think cats like us much!

Now my parents say that me and Alf can't have any pets while we live in their house as pets are too much work. We've tried arguing and got round it a few times as you can see from the pets list above (stick insects, hamster and cat were exceptions) but they're sticking to it now. I've always wanted a dog, so am definitely going to get one when I have a house of my own. Before my transplant I wanted a pet ferret and when I was very ill my dad actually promised that I could have one when I was better. But then my consultant said no :( I don't really want a ferret any more as I've kind of gone off that idea, but when I've mentioned that promise to my parents in the hope of getting some kind of pet, they both claim to know nothing about it!

'I don't really think this is the kind of thing that is appropriate to share online and perhaps too personal...but I was wondering(so thought Id let you know my thoughts!) about your donor and their family. It would be interesting to hear what made the family make such an amazing decision at a difficult time, and the circumstances. I certainly wouldn't feel it was something Id want to share online if I were you.'
I know quite a bit about my donor and her family so I'm going to have a go at responding to this as best I can. I'm going to use any initials instead of names though, as I feel that would be most appropriate. My donor, E, was 19 when she died very unexpectedly from a brain haemmorage. E was the youngest of 3 sisters and both of her older sisters work in the medical profession (J is as a doctor and C is as a nurse), so organ donation was something the family were aware of and had discussed. My donor's family were aware of E's wishes to be an organ donor, so the decision wasn't too difficult for them.

It is really important that when someone signs up to the organ donor register that they also talk to their family about their wishes because it can make the decision about organ donation so much easier for the family if something happens to their loved one and they know what their wishes were.

'Perhaps it might be better to ask 'How did you feel to be a recipient of an organ/organs?''
This is a tricky question. I felt lucky because I know that my transplant saved my life and I felt excitement at the prospect of my future. But it was tinged with sadness too because I knew that someone had had to die to enable me to live. I've tried not to dwell on that too much though.

I've heard some stories on the Internet about transplant recipients finding it strange to have someone else's organs inside them, but I've never found that. The way I see it is that my 3 transplanted organs are inside my body and have my blood running through them, so they're mine now. So I don't find it uncomfortable or disturbing. I will never forget that they were once my donor's though. Now I've become more involved in the transplant community and have seen people's time run out while on the waiting list I am aware of just how lucky I am that I received my call in time.

I just want to add a bit more about my relationship with my donor family now. When I was in hospital recovering from my transplant I was visited by a transplant co-ordinator who sat down with me and my parents and asked if I wanted to know a little about my donor. I said yes. At that point all I think I was told was that my donor was female, she'd been 19 and I was also told what area of the country she was from. I can't remember if I was told at that point or later about the cause of her death. And I was told that I could write to my donor family if I wanted to, but I mustn't expect a reply back, as the family don't always reply. I knew that I wanted to make contact with my donor family, but decided to concentrate on getting better and out of hospital first and then I could write that letter when I'd recovered a bit more and it'd be more positive.

When I was about 3 months post transplant (so about the time I returned home) we received a phone call from the transplant co-ordinator saying that my donor family had written me a letter and I was asked if we would like to receive it (all correspondance has to go through the transplant co-ordinator to check suitability of letters etc). I said yes of course and waited for the letter. I waited and waited, but it didn't come. We assumed that it had been lost in the post and so contacted the transplant co-ordinator who said that they'd photocopied it before forwarding it on, so would send us the photocopy.

Then the photocopy and the actual letter arrived within a couple of days of each other. I was so glad to receive the actual letter because the photocopy had chopped some of the writing off and a photocopied photograph was no replacement for a real one. The letter was from my donor's eldest sister, J, and was lovely. It was written inside a card and my J wrote on behalf of her family and told me about her sister (and included a beautiful photograph of E) and sent her best wishes to me. J included her email address and so instead of replying with a letter though the transplant co-ordinator I emailed her directly.

Since then we've been in contact via email every so often when I've updated my donor family on my health and life (and sent them some photos of me) and also on significant occassions such as my transplant anniversary, Christmas and my birthday. J passes my messages onto her parents and says that it helps their loss to hear how well I'm doing.

Just over a week ago I received an email from my donor's other sister, C. She said that she's enjoyed reading my emails to J and just wanted to make contact to say hi. I replied to that and have since received another email from her.

I feel really priviledged to be in touch with my donor family as I know most transplant recipients don't get that chance. I'm very happy to update my donor family on my progress as I feel that's the least I can do. And being in contact with them makes me happy too :)

Being home alone and not feeling great

I've not managed to update my blog for a whole week, so sorry in advance for the length of this as I know it wont be short! :P

On Tuesday mum and dad went away. Dad's sister and her partner rent a wooden cabin at a fishing resort through the winter as they both love fishing. My dad is also loves fishing so sometimes he goes to their lodge for a couple of days, but this time mum accompanied him. Dad enjoyed lots of fishing and mum explored the local towns, took photos of dad fishing and knitted! Mum works part time in our village library so they went Tuesday eve (because she worked Tuesday in the day) and she had to come back on Friday in time to work that evening. Dad got Wednesday to Friday off work last week, but had to come back Sunday eve (after a day of fishing) because he's got to go back to work. Because of all my medical problems in the past mum and dad have never been able to both go away before, so this was a new experience for me and Alf being home alone for 3 days. But we survived! :D We didn't argue (well only a little bit when Alf played his horrible music really loud!), we didn't starve (yay for pasta, pot noodles and microwavable rice!), I worked the dishwasher and even did a load of washing! Alf missed his college bus on Wednesday though after a stupidly late night, including having a shower at 12.45am! I missed mum a lot as I've not been apart from her much before, so we made lots of phone calls when mum had enough signal. And one of our lovely neighbours called round twice to check on us. We appreciated the thought but didn't have any problems so just told her we were fine. She realised that Alf should have been at college when she came round on Wednesday though, so told him off, lol!

My nocturnalism has been up and down. I wasn't at all nocturnal on Wednesday so was asleep by 11.30pm, which is very early for me! I was also not very nocturnal on Thursday so fell asleep just after midnight. I've been very nocturnal other nights though. This week I've also had difficulty getting up in the mornings and have a few lie-ins which I do usually try not to do. I was woken by doorbell twice though - once for a medical delivery and I don't know who it was the other time because I didn't get to the door in time. My Melatonin isn't helping at the moment because I can't make the ideal dose from the tablets I've got, so I definitely need to look into buying some smaller dose tablets so I can adjust the dose more finely to get it right for me.

I did have to get up earlier than I usually do (9am) on Thursday for an orthodontist appointment. Chris' girlfriend Sophie gave me a lift because mum and dad were away. My orthodontist was running 45mins late, but no-one warned me, so I thought I'd been forgotten! There was a very cute little 2 year old girl in waiting room though who kept everyone amused while waiting :) My actual appointment was very quick as I just had my wires changed and my orthodontist wasn't rude to me! Usually I just have the wires tightened, but this time I had my wires swapped for some thicker and less flexible wires, which shouldn't pop out of place when I eat :) My next appointment is on New Years' Eve, but I don't mind as I wasn't planning to do anything to celebrate. And my orthodontist said that next time he might be able to start the gap closures. I don't know what that involves - elastic bands maybe - but it sounds like progress :) I was warned that my mouth would be very sore afterwards and it has been, which has caused me difficulty eating (as my teeth would hurt when I touched them together, such as when chewing food). Paracetamol helped sometimes, but not always, but the pain is gradually easing now. My eating has also been affected this week by me feeling very nauseus one day (which is very unusual for me) and me having bad tummy aches which put me off eating.

I've spoken to my dietician via email as my weight was up again when I weighed myself on Tuesday :D So the plan now is to gradually reduce my feeds, so I'm having 5 nights of feed this week. I'm a bit worried about my weight though because my eating hasn't been very good, but I'll just have to wait and see how it is on Tuesday.

I felt very very tired at the start of the week after last weekend and although I expected that for a bit I didn't expect it would take me as long to recover as it did - I'd say I didn't recover til Thursday. But although I've recovered from that now I've still not felt right - I've been exhausted, had bad tummy aches, had a fuzzy head, poor concentration (worse than usual) and I've just felt rubbish :( Claire came round Wednesday night and we were planning to go out for a meal but we decided not to because I didn't feel up to it. I seem to have been more clumsy this week - I knocked over my cup of water in my bedroom on Monday night and it went all over my floor including over my electrical plug extension. Whoops. And then on Tuesday I'd just boiled a full kettle of water and was trying to pour it into a jug to put outside to cool for my drinking water, but missed the jug and poured the boiling water all over the kitchen surface and the floor - luckily it missed me. And my memory seems to have got worse too over the last couple of weeks, I often can't remember if I've told people things or not, which is not like me. I think most of this is ME related though, so I'm not worried, just frustrated :( There has been one positive though and that is that my temperature control seems to have been a little better this week :)

I heard some great news from R on Wednesday - she got home after 3 and a half weeks in hospital :D She's been so supportive to me, so I'm glad I could help her out when she was in hospital :) Fingers crossed she can remain at home now.

I heard from the psychologist at Hospital B via email this week. She was lovely when I saw her a couple of weeks ago and thought she could definitely help my ME. So we've been in touch via email to try to arrange a date for me to go to the hospital just to see her before my inpatient stay in December. The date hasn't been confirmed yet, but will probably be mid-November. I'm feeling quite optimistic and hopeful about that :)

I've also been in contact with Sarah this week about trying to reschedule my Gifts of Life Photoshoot. She's running behind schedule due to taking some time out from the project to organise the fantastic Save Jess-tival, but needs to find out the deadline and budget and then she'll get back to me once she knows whether she can fit my shoot in or not. I really hope so, so I've got my fingers crossed.

I think I mentioned on my last long blog update that I'd received an email from my donor's other sister, C. I took a while writing my reply because I felt I had to get it just right, but when I was happy with it I sent it. I got a lovely response within a couple of hours. So I sent a reply back to that too. C seems lovely and I'm really glad she emailed me :)

I've not been out much this week, but after my orthodontist appointment on Thursday we popped in to Sophie's mum's house to collect a degu run that she'd ordered off the Internet and asked to be delivered there. The degu run was too small, I think it was designed for hamsters, so the degus would be able to escape from it as it doesn't have a top. While we were there I met Sophie's mum for the first time (even though Sophie and Chris have been together for 18 months now) and she was very nice. She was thinking about getting Sophie's 7 year old sister a Wii for her birthday next month, so I gave her some advice about that :) I also met their 2 very cute little dogs. And then after that rather than taking me straight back home, Sophie asked if I wanted to call in at her and Chris' flat to meet the degus. I said yes of course! They were soooo cute :) I didn't manage to get any photos because they were so fast, but I'll have to raid Chris and Sophie's Facebook profiles to try to find a few photos to show you :)

On Sunday morning me and mum went out to browse round our local carboot sale. It was the first time I'd been in weeks. I set myself a spend limit at £5, but spent £5.20. However I got some real bargains. For just £5.20 I bought 3 DVDs and a necklace and earring set for me, 2 CDs for mum for Christmas and a friend's Christmas present :D Then on the way home mum called in at the Co-op for a bit of shopping, but I stayed in the car and listened to the radio :)

Mum picked up my ESA medical certificate from my GP on Monday morning and I got it posted off that same day. Despite the postal strikes I received a letter from them on Saturday morning saying that they received my certificate so are still paying me my ESA :) I still need to attempt the daunting medical questionnaire though.

Also in the post this week I received my Taylor Swift tickets for her concert next month and the 2 monthly magazines I subscribe to - Official Nintendo Magazine (ONM) and Focus. I loved reading ONM but haven't managed to read much of Focus yet because I've had trouble concentrating and it's content is quite sciencey. I also received a letter from Hospital B about my December admission. I was told on the phone when the date was changed that even though I'd be staying in the hotel I'd be on the ward during the days for my tests, but the letter said instead of being on the ward I'll be on the medical day unit :( I'm not very happy with that because I know everyone on the ward and because I've not been there for nearly 18 months I was looking forward to the familiarity and seeing all the nurses again. I've only been on the medical day unit for 1 day over 3 years ago, so don't know it and don't know the nurses. But I do remember it having no character. So I'll have to see if that's negotiable at all.

Now I'm trying to remember what I've been doing to amuse myself this week. I did a jigsaw on Monday for the first time in ages. I used to enjoy doing jigsaws so found my favourite one (made of wood with odd shaped pieces and picturing jungle animals) and had a go. I quite enjoyed it :)

I've also listened to lots of music. I've been listening to Little Boots' album (Hands) in preparation for her concert on Thursday, both of Taylor Swift's albums (Taylor Swift and Fearless) in preparation for her concert next month and of course some Mika too (Life In Cartoon Motion and The Boy Who Knew Too Much) :D

I was disappointed to discover that Mika's fantastic single Blame it on the Girls won't actually be released in the UK, but instead will only be released in the USA and Japan :( Instead Rain will be his second UK single from The Boy Who Knew Too Much. I like Rain, but not as much as Blame it on the Girls. And I was surprised to hear that Cheryl Cole knocked Alexandra Burke off the top of the singles chart this week. That was unexpected. But Alexandra Burke is number 1 in the albums chart this week. Last year for the first time all of the X Factor contestants released a single together to raise money for charity, which you can see here, and it was a big success. So this year they're doing a charity single again and you can see more details here. I'm not sure about the song choice, but am very glad they're doing it to raise money for a children's hospital :)

I've watched some good music videos on the TV music channels and on Youtube this week :) Laura White was one of my favourites on last year's X Factor and I was shocked when she went out so early in the competition. So I was really glad to hear that she's got a record deal and was looking forward to hearing her first single. She's got an amazing voice, but disappointingly I don't like the song. I've also seen Pink's latest video for I Don't Believe You (I quite like the song, but the video is a bit slow for me), Lily Allen's latest video for Who'd Have Known (love the song and love the originality of the video) and Taylor Swift's latest video for 15 (quite like the song and video). And I've also been watching some videos from Little Boots' Youtube channel which includes some great covers and acoustic versions of songs from her album. Several years ago my uncle used to manage a girl group called Sweet FA. You probably wont know the name because they split up after 1 single, but it was a hit so you might recognise their song Flowers. The official music video for Flowers isn't available on Youtube, so me and mum got a shock when we were flicking through the music channels on Saturday and the video was playing as we'd never seen it before!

I've watched a lot again on TV this week, so won't mention every programme I've seen. I watched the first episode of a new series of a programme called An Island Parish last Monday because it's set on the Isles of Scilly and some of my cousins live there. I've not seen them on any programmes so far though, but it is interesting to watch a documentary set where they live. I also watched another great episode of the David Attenborough series Life and a very interesting Horizon programme. I was bored one evening and was channel flicking when I found a very odd and actually rather disturbing programme about baby models! And I've discovered the time wasting day time TV such as Channel 4's Wife Swap and a Sky 3 documentary called Medical Emergency, lol :P My excuse is that's it's boring being ill and being at home most of the time!

I heard that the BNP were on the BBC's Question Time earlier this week. I didn't watch it but heard loads about it on Facebook and online forums afterwards, so am considering watching it on iPlayer. After hearing various comments about it I couldn't believe it when I read this article on the BBC news website about support for them soaring - 'A YouGov poll in the Daily Telegraph suggests 22% of people questioned would "seriously consider" voting BNP.' That's scary.

I've also watched an episode of the Vicar of Dibley from my DVD boxset and mum talked me into watching a Clocking Off episode (from her DVD) with her. The Clocking Off episode wasn't bad, but it was quite complex and I struggled to keep up with it so got a bit confused! I might watch some more episodes when I'm feeling a bit better, but won't watch any more at the moment.

And I've watched some good DVDs this week too :) I watched Ghosts of Girlfriends Past, which was original and quite funny and Meet the Parents, which was very funny, for the first time. And I rewatched Juno, which is one of my favourite films ever and Coraline, which is great. I also watched some of the special features of both Juno and Coraline and found them really interesting. And excitingly I found a Toy Story 3 trailer on the Internet which you can see here.

This has taken me ages to write up and as I expected it's scarily long :P As if in protest while I've been writing this my laptop screen started to fall apart, but luckily my dad has managed to stop it falling apart any further although he couldn't fix it. That's made me realise that I really do need a new laptop, but I've got my fingers crossed that this one will survive til the Januaury sales. My dad is good at fixing things though as he also demonstrated when I couldn't change the time on my watch. I've not had it for long, so haven't had to change the time before. But when I came to do it when the clocks went back, I couldn't. So dad had a look for me and had to take my whole watch apart and manually move the hands to correct the time! Next time I buy a new watch I'll remember to check that I can adjust the time on it :P