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.