GFR and clinic at Hosp A

Today (18th Oct 2010) I spent most of the day at Hosp A. I'd asked for two appts to be on the same day so we could save ourselves a 60 mile round trip. It made it into quite a long day though. I am aware I've used some medical terminology in this post but I hope I've explained everything ok. If there's anything I need to explain but haven't, just let me know in a comment :)

We set off in plenty of time this morn (which meant me getting up at 7.45am, eek!) and left ourselves an hour and a quarter to travel the 30 miles to Hosp A as that usually works out fine. The hosp is in a city and we have to use a few major roads to get there which is why it takes so long to cover 30 miles. Unfortunately there was a traffic accident on our route this morn which delayed us and then the traffic just seemed very heavy at a couple of other places on our route. So I had to ring the department up and let them know we'd be a little bit late. Think I was about 15/20mins late in the end.

When we got to the hosp we nipped into the main toilets in the concourse and weren't impressed to find that only 2 out of 5 cubicles had toilet roll. When I was there last Thur only 3 out of 5 had. When we returned to the toilets about an hour later we couldn't believe that only 1 of the 5 cubicles had toilet roll so we complained at the reception desk. The lady there said she's already phoned up about it but phoned again. When we called back later there were toilet rolls in all the cubicles :)

I then headed to the nuclear medicine department for my kidney function test, known as a GFR. The antirejection medication I take, Tacrolimus, can damage your kidneys so they have to keep a close eye on mine. I had this test once at Hosp B in the 4 years following my transplant but my consultant at Hosp A suggested I had it 3 monthly. I persuaded him to make it 6 monthly, but if my results from today's test come back fine I'm going to ask him if I can have it annually. The test consisted of an injection of radioactive material into one hand and then blood taken from the other hand (via a cannula) 2, 3 and 4 hours later. So lots of waiting around.

I was a bit nervous about the injection and the cannula because sometimes phlebotomists struggle with my veins. The doctor I had for the injection didn't seem very friendly but she listened to me when I told her which my best veins were and said she'd be fine using veins in my hands (as the ones in my elbows are rubbish, but sometimes phlebs won't accept my word from that and want to try them). So she inserted a butterfly needle into my right hand, flushed it and then gave me the radioactive injection. As she gave me the injection I felt the cold liquid and then felt a bit hot and slightly faint. I didn't think anything of it as I sometimes feel a little bit faint after blood tests, but I took my fleece off and told her how I felt.

Then things got a lot worse and I felt really really ill. I've felt a bit faint after blood tests before, but not like what happened today. I felt like I was boiling up, my heart was pounding, I felt really faint, my hearing went funny (everything went echoey), everything seemed really distant and it was really scary, I was terrified. I'm not entirely sure what happened next but I think I was helped onto a bed and was wheeled to a different part of the department. Mum said it was all over quickly but it felt like a while to me.

I gradually started to feel a bit better and could sit up. Most of the radioactive team were away on a training morning so there weren't many people around, just the doctor who'd given me the injection and two nurses. We spoke to them a bit and apparently there isn't anything in the injection that people can react to and no-one had ever had any problems with it before. They seemed to think that I'd just felt funny after having an injection, but I know it was more than that.

Mum thinks my body has problems with adrenaline because often I seem to get extreme reactions to relatively harmless things. Apparently the radioactive material is seen as a waste product by your body so I think mine reacted to that for some reason. Although I'd had the test at Hosp B once before I don't know if they used the same radioactive material. I felt back to normal within about 20/30mins I think, but I don't really know what length of time it was. I felt light headed and my hearing went funny on a couple of occasions over the next few hours but it wasn't too bad. I don't understand my body! :P

The waiting around between blood tests wasn't as bad as I expected. There is free wireless Internet in the concourse, so I surfed the Internet on my iPhone and listened to some new music I'd downloaded last night. I decided not to have a cannula inserted just after the injection but to have it when I returned for my first blood test after 2 hours. We hadn't been told we had to return to a different reception so were waiting in the wrong place for a little while! I told the doctor which was my best vein on my left hand and she said it wouldn't take a cannula. But it did! :) I thought their way of protecting the cannula was funny, they didn't bandage it like Hosp B used to do, they just put a tubigrip over my hand :P That was much more comfortable once a nurse suggested cutting a thumb hole in it :) The cannula was fine for my first and second blood tests and just lasted for the third one, phew!

As a result of being late for my GFR and then having some of my blood tests a little late we were a bit late to my transplant clinic which had been scheduled after that. But I'd already text S, the transplant co-ordinator, to let her know, so that was fine. Mum attended the clinic appt with me and also in the room were my consultant, Dr W, the transplant co-ordinator, S, and my dietician, C. While we were waiting for Dr W to arrive we chatted to S and C. I'm still not sure about S but I really like C :)

Dr W took my dizziness seriously which I was really pleased with. He took my sitting and standing blood pressure which were both exactly the same and within the normal range so that suggests it's not related to my blood pressure. He thought that lying down when I get dizzy might still help though. He said when I get dizzy he wants me to do a couple of things to get some more information about it. He wants me to monitor my pulse and see if it speeds up or is irregular at all. And he wants someone else to look at my eyes and see if they flicker at all. He's also going to contact my GP about me getting a 24 hour tape (where your heart rhythm is monitored for 24 hours at home) done at my local hospital.

Dr W thought my headaches might be tension headaches as they tend to occur in the evenings and are in my forehead. Apparently there's not really anything that can be done though. Amitriptyline sometimes helps but I'm on that already. So he said just to see how they go and be aware that they might be caused by tension, but apparently there's nothing I do to fix that so I'm not sure why being aware of it will be helpful! S thought some gel pads that you can buy from the supermarket for migraines might help. And Dr W suggested it might be a good idea for me to try drinking more, or at least to spread my drinks out more evenly throughout the day, rather than drinking most of them at night, in case the headaches are caused by dehydration.

I told Dr W how my gynaecology stuff is going and asked him what he thought about me trying the combined pill. I'm currently on a progesterone only pill (POP) as I'd been told because I had liver problems in the past I couldn't have a pill containing oestrogen. But my new liver is healthy and has never had any problems. And I'm having trouble with my periods at the moment, which the POP doesn't control but a combined pill would. He couldn't see any problems with me having a combined pill so suggested I talk to my gynaecologist about that when I see her next (on Dec 23rd). So I'm hoping she'll say yes and that'll sort my periods out, fingers crossed.

I mentioned that my abdominal pains are better at the moment, but I'm not sure if that's due to doubling the dose of my amitriptyline, starting some fibre supplements or varying my diet more. Or maybe a mixture of those things. Dr W was pleased with that but wasn't surprised that I'm still getting some pains because my body is still getting used to what's normal for me.

Everyone was very pleased that my weight is so stable, that I'm finding eating easier at the moment and that I'm being a bit more adventurous with trying new foods.

I told my consultant how I'd corrected my sleep pattern for about 6 weeks but hadn't found that my productive time (11pm onwards) came at any other time of the day, I'd just lost it completely. Then when it slipped I couldn't motivate myself to correct it again. He suggested I tried to correct it again but more gradually this time. I've not decided if I'm going to do that yet - it's so hard fighting my body.

Dr W couldn't offer any help for my frequent coldsores so I guess I'll just have to put up with them. He didn't have any ideas about my eye ache and was as puzzled as everyone else has been about the rash I get under my eyes from the sun, but thought sunglasses might be a good idea, so I'll look into them again next summer.

After I told Dr W about my reaction to the GFR he was very puzzled as he didn't think there was anything in it that I could react to either. I told him I was worried about my next one following my experience today so he said before that he'll arrange for me to have an injection of a small quantity of the radioactive material to see if I react to that.

I asked about the results of the DEXA scan I had about a month ago and I'm glad I did because I don't think Dr W would have told me otherwise. Apparently my bone density was -1.9 which is right at the bottom of the normal range. I asked if that could be due to my steroids but he thought it was more likely to be due to things in my body being a bit delayed due to me being so ill. He said they'd keep a close eye on it but wants to start me on a calcium supplement as a precaution. He gave me a prescription for that to take to the pharmacy there but when we tried that they said we'd have to wait 40mins! That would have meant we'd have had to drive home in the rush hour so we decided against that. We were supposed to go back and ask for a different prescription to take to my GP but I've just emailed my GP the details from that prescription and I'm sure he'll prescribe it for me.

Finally I mentioned to Dr W that I'd volunteered him to talk at the PINNT weekend next year that I'm going to speak at. He didn't seem to mind :)

It was nice to head home after a long day, I think we'd spent about 6 hours at the hosp. I've got a 2 and a half week break before my next hosp appt. I'll next be seeing Dr W when I have my annual scope at Hosp A sometime in Dec and I think I'll see him properly in clinic in Jan or Feb.

I'm just having a quiet evening. Alf had some friends round briefly earlier and mum was chatting to one about knitting because she'd started her off knitting last time she came round! Mum also got chatting to two fellow knitters at the hosp today, she must attract them in some way! :P

I've got a few nice plans for the next few days. Tomorrow aft a friend with ME is coming round and on Wed eve I'm going to the cinema with Claire to see Eat, Pray, Love. Then on Sat I've got my first concert of this spell of them - Marina and the Diamonds! I'm so excited :D And next Mon is my second concert - Eliza Doolittle :)

A busy few days

My older brother Chris has always been very unreliable. He was going to come round to see us on Tue but then on Tue when I phoned him he said he'd come round the next day instead. He didn't show on Wed either. I'm always surprised when he doesn't turn up, but I really shouldn't be after all this time! :P

On Sun night I had another dizzy spell so I got a GP appt for the following morn :) After looking in my ears, making me move my head and follow his finger etc he told me that I had viral labyrinthitis. I was so relieved to hear that it's nothing to worry about and isn't related to any of my other medical problems, phew! Apparently it occurs when a mild virus affects one of the balance centres which slows the signals down so they're not in sync any more. And that means that when you turn your head you feel dizzy. He was very surprised I'd not looked my symptoms up on the Internet - I'd never do that, I'm sure that would scare me to death! :P There is no cure but medicines can be given for the symptoms if necessary. Sometimes it goes withing 24 hours, sometimes it takes a week or so. But he thought mine was definitely on the way out, so it should go completely soon. I've had a few more dizzy spells since though, so I really hope it disappears soon. My GP also said that sometimes it reoccurs a second time so I've got to keep an eye out for that but if it does, the second time usually isn't as bad as the first. And while I was there we also reviewed all my medications.

On Mon aft me and mum went to see my nan. I took her a copy of The Family Jewels CD by Marina and the Diamonds and taught her how to play that through her laptop :) I also installed a new printer cartridge for her. We then put the music on in the background and me and mum helped my nan sort through all her books. She didn't get rid of many though and wanted to keep loads that me and mum disagreed with her about :P

While I was at my nan's I was disappointed to put my finger through my jeans, they've got a small hole in the back :( I hate shopping for clothes and always struggle to find ones that fit well and are comfortable so I was very happy to find 2 pairs of perfect jeans a year or two ago, but now one pair has a hole. I'm sure I'll put off shopping for some more for as long as I possibly can but I'll have to do it soon. The cuffs of my favourite hooded jacket and poloneck are starting to fall apart too. And while I was at my nan's I discovered holes in the socks I was wearing, but I don't mind about that - socks are easy to buy and I have plenty of pairs.

After we got back from my nan's I sent off an application for a new CEA card (the card that allows a carer into the cinema with me for free because I receive DLA) because they only last a year and my old one is about to expire. I thought I'd have to try to sort out a passport sized photo (I hate having my photo taken) but luckily I found one tucked away, phew!

As you'll probably know from reading my past blog updates there is a fantastic charity called AYME which supports young people with ME and has been invaluable to me since I was diagnosed with ME last Aug, especially the message boards where I can talk to other people who know what I'm going through. A couple of weeks ago a post was put up on the message boards saying they were looking to recruit some new voluntary peer support moderators (PSMs). The PSMs keep the board running smoothly, support users, provide information in response to posts and remove any inappropriate messages etc. Because I'm already very active on the boards I really liked the sound of this but didn't know whether to apply or not because I tend to commit to too much and then can't keep up with everything. But the day before the deadline I decided to go for it. I'll let you know when I hear anything.

On Mon eve I watched Young, Austistic and Stagestruck and the first 2 episodes of the new series of Bizarre ER on TV. I also watched 2 episodes of the second series of Outnumbered from my DVD.

On Tue in the post I received a bank statement and my new phone battery. Unfortunately replacing the battery in my phone hasn't fixed the problems. Although the new battery lasts longer than the previous battery did it still runs down in about a day. And I still can't send or receive texts or phone calls. Grrrr. It's so frustrating not having a working mobile. I tried swapping my SIM with mum's SIM to find out whether the problem was with my SIM or the phone itself. However my SIM worked in mum's phone and mum's SIM worked in my phone, but my SIM doesn't work in my phone - how odd! I think my best bet would be to go into a T-Mobile shop and ask for their advice, but the nearest one is in the city and I don't have any plans to go there at the mo and it's a bit far to ask mum to go just for that. I thought I'd try using an old phone for now so found 2 old Nokia phones in the house. Unfortunately neither of them work so I've put out a request on Facebook asking if any of my friends have a phone I can borrow until I get my phone looked at at a T-Mobile shop. It might be completely broken, but I'm not sure yet if it's going to be fixable or not. And I don't want to buy a new phone because I'm getting Chris' iPhone in Sept so I guess if my phone isn't fixable I can just use an old basic phone til then.

I didn't do much on Tue but did a few odd jobs like going to the local shop for the new Radio Times and sorting the dishwasher and washing out for mum because she was at work. I watched the music channels for a while during the day and a programme I'd recorded the previous night about a prison called Wormwood Scrubs.

I received a reply from my dietician at Hosp A saying that she's happy for me to stop the high calorie puddings :) I'm currently finishing up the ones I've got (I think I'll have my last one on Mon eve) and we'll then see how my weight goes without them. I think I'll be fine without them, but I'll let you know how it goes.

I heard that the page that me and Emma wrote for Transplant Kids has been added to the main website :) You can find it by going to the main TK page here, clicking on 'info' and then clicking on the red box on the right side of the page just before half way down. Or you can go directly to it by clicking here.

After my braces behaving so well for a while I wasn't happy on Tue when I realised that one of the brackets was cutting my lip. I put some wax on the offending bracket overnight to protect my lip and it's been fine since then :)

On Tue eve I watched Children's Hospital and Children's Emergency on TV. I also watched the last 3 episodes of the second series of Outnumbered plus all the extra features from my DVD.

That night I forgot to take my Amitriptyline for the first time. I don't think it makes any difference to my sleeping so wasn't worried there but was a bit fearful of getting more tummy pains the next day. I did get some the yesterday but they didn't last too long and weren't too painful so I think the Amitriptyline has probably built up a bit in my body. When I had those tummy pains I realised they were the first I'd had for a few days :)

Yesterday (Wed) aft I went into town with mum. While I was there I bought Sonic and Sega All-Stars Racing for the Wii (which was released down from £30 to £20 in the GAME sale) and Super Bust-A-Move for the PS2 (which was 99p in Cash Converters).

After that I headed to my physio appt. My physio had a look at my feet and my legs and I had to do some walking for her. She said that she thinks that the pain I'm getting in my heels isn't being caused by a problem with my feet because I'm not flat footed (my GP said I was, but I trust her opinions more in that area) but the muscles down the backs of my legs and feet are tight which could be causing the pain because my feet have to compensate for it when I walk. So I've got some calf stretches to do which should help, fingers crossed. She also gave me some general conditioning exercises to do at least 3 times a week. That'll be a challenge for me because I've never stuck at doing physio exercises before, but I'll give it a try. She suggested I set a goal to try to gradually build up the length of time that I do the exercises for and maybe set a goal to try to gradually work towards about being able to walk for a certain length of time. She wants to hear my goals when I next see her in 5 weeks time. She also told me that a colleague of hers had told her about a local ME clinic so she wondered if I'd heard of it. That's where I was diagnosed so I told her about my experiences with them - they couldn't offer me any more than a diagnosis and one appt with an occupational therapist due to a lack of funding. She suggested I should phone them to ask if they can offer me anything else (that's already on my to-do list) because the physio dept I'm being seen at is mainly for pain.

After my physio appt me and mum went to see my nan and I taught her the basics of how to use her new digital camera. And she insisted on paying for the Wii game I'd just bought because I do so much to help her! I did say that I couldn't accept the money but she wasn't having any of it, hehe.

When we got home I had an email from S (the transplant co-ordinator at Hosp A) saying she's spoken to the phlebotomist I see at Hosp H (my local hosp) for my bloods and that things should work similarly when I'm under Hosp A. However they don't use Tac kits so I'll have to have Tac bloods done with the rest of my bloods too. They'll send me a bloods letter before each clinic so my consultant will have the results by then. Because I have to have Tac bloods done at the hosp I'll have to delay taking my Tac but if I get my bloods done early I shouldn't have to delay it too much and that'll be fine because that's what the rest of their patients have to do. Because Hosp H don't process Tac bloods I'll then have to post that to Hosp A (apparently S is going to provide me with a box to send the sample in) to be processed there.

I chatted to my parents about this over tea and I was a bit concerned that S hadn't thought this through, so I emailed her with some questions about my Tac bloods that eve. If I've got to post the Tac to Hosp A why can't I take the blood via a fingerprick at home? I've got loads of lancets (finger prickers) so will only need the bottles. I need to find out how much blood they need too. If I can do it that way I won't have to delay taking my Tac. If taking Tac is delayed the levels in the blood drop and that creates more rejection risks. The doctors make out that delaying Tac for a few hours to take bloods isn't risky, but I've never done that (because I've always done my bloods at home via a fingerprick) and I've also never had rejection (98% of all small bowel transplant rejections do in the first 2 years after transplant). I suspect there may be a link there so don't want to start delaying Tac doses if it can be avoided. I also need to check that Hosp H have the right Tac bottles because when I ran out of the ones that Hosp B gave me I asked for one at Hosp H but they didn't have them. Maybe Hosp B and Hosp A use different Tac bottles. I also need to know how S is going to get the box for posting the Tac to me because I'll need that before the clinic. Hopefully S will reply soon.

I've been wanting to speak to my parents about all my other transition concerns for a while because my transition date (7th June) is getting closer and I'm really not happy about it. I asked to be told how things would work when I was completely under Hosp A but I've not been given as much info as I'd like and I'd like to be able to spot and then act on potential problems now, rather than when they actually occur. And the team at Hosp A (with the exception of the dietican) haven't proven themselves at being good at communicating with me either. Hopefully I'll be able to talk to my parents about it at the weekend.

Alf is trying to get stronger and beef himself up because he's really skinny. His favourite method of doing this is by standing at the bottom of the stairs, grabbing the landing floor and pulling himself up. I know this probably doesn't make much sense, it's hard to describe :P The other day Alf ordered himself something from Amazon that you attach to a doorway and then it gives you a bar that you can do chin-up type things on. Again this probably makes no sense, but it looks like this. It arrived in the post yesterday and he's really pleased with it.

Yesterday eve I watched the first episode of Junior Apprentice, Embarrassing Bodies: Kids, Lord Sugar being interviewed on Fri Night with Jonathan Ross and Autistic Driving School. Unfortunately our Internet was playing up so watching Embarrassing Bodies (a 45min programme) online took me 90mins and watching Autistic Driving School (a 60min programme) also took me 90mins!

Today (Thur) I went into town and my tummy pains were very bad. Luckily they eased off in time for me to go into Barnardo's to do an hour of volunteering. I'm trying to stick at it but it's so boring and monotonous. Mum popped in to see me during my hour of volunteering today because she was trying to avoid being spotted by someone she knew on the high street :P She'd not seen me volunteering before and couldn't believe how dull what I was doing was! There was only the grumpy lady from last week in and she didn't talk to me. Mum told me later that she hadn't been busy with customers, she'd just been sitting in the front of the shop reading her book - so she could have talked to me! So I just stood and hung clothes up for an hour. I really don't know what to do now, I don't enjoy it but feel like I'm doing something worthwhile and it's good to have something to do outside the house, so I feel like I ought to stick at it. I don't know if I can though.

When I'd finished volunteering I met mum in a cafe where we had drinks. I then bought some presents for a friend who's birthday is at the end of May and I bought myself a few packets of my favourite biscuits from M&S ;)

This eve I made a start on planning the organ donation talk I'm going to give to a group of Claire's students next Wed. I've not done much work on it yet but know have a rough outline so that's a good start :)

I also spoke to my friend Het on FB chat. She lives out of the nearest city in another direction so we don't see each other very often (it can only usually happen if I'm feeling up to going into the city and she's got a free day, which isn't very often!) but her study leave is starting soon (she's in year 12 at sixth form), so she's got some free time and wants to come round and see me. She's got a moped so is going to drive here and she's happy to do that even though the journey will take her about 45mins. It's really lovely to hear from someone (apart from Claire or Lizzy) who wants to see me and doesn't need me to do all the chasing and planning to make it happen :) She's going to be in touch again in a couple of weeks once she's got some exams out the way, so hopefully we'll be able to choose a day then.

I had fun trying out Sonic & Sega All-Stars Racing but found it quite tiring. And I enjoyed watching the latest episode of Outnumbered on TV.

While I've been writing this up I've listened to Diana Vickers' album, Songs From The Tainted Cherry Tree, on Spotify and am now listening to Pixie Lott's Album, Turn It Up, on iTunes. I found an interesting interview with Diana Vickers on the Internet which you can read here. I also found this interesting video on the Internet that goes behind the scenes of Ellie Goulding's latest music video.

I found out on the Internet that Selfridges in London have allowed 10 music artists to design a window display about one of their songs or albums. Marina did one based on I Am Not A Robot, so I had a look at the photos of that on the Internet. You can see more about the window displays including photos here.

I'm sorry this has ended up so long, I didn't expect it to be. I probably ought to try to write less but I find that so hard! :P My blog is now completely up to date for the first time in over a month :D

Getting up to date with April - part 9 (music and mum's knitting)

In the weeks since my last update I've been enjoying listening to lots of music and reading and watching interviews with some of my favourite artists. When a song name is a hyperlink, clicking on it will let you watch the video for the song on Youtube.

Marina and the Diamonds has had a lot of publicity recently to promote her latest single. I read an interview with her in a local magazine and saw her being interviewed and/or performing on Loose Women, Live from Channel 5 and BBC Breakfast (which you can see here). I thought she was fantastic performing 2 songs on Later with Jools Holland. Unfortunately the programme isn't available on iPlayer any more but you can see the video of her performing I Am Not A Robot on her blog here. She was also on Radio 1's Live Lounge where she was interviewed and performed one of her own songs (I Am Not A Robot) plus a cover (Starstrukk by 3Oh!3), which you can listen to here. I Am Not A Robot was released a couple of weeks ago and despite all the work she did promoting it it didn't chart very well in the Official UK Top 40 - it only reached number 26 the first week and then fell to number 33 this week :( I've really enjoyed listening to her album, The Family Jewels, on repeat lots more and am very happy that I managed to get tickets to see her in concert in Oct (which I blogged about here).

Diana Vickers has also been doing a lot of interviews and TV appearances recently promote the release of her debut single and debut album. I read an interview with her in a local magazine and saw her on GMTV, Something for the Weekend, Live from Channel 5 and a T4 programme. She was also on Radio 1's Live Lounge where she was interviewed and performed one of her own singles (Once) plus a cover (Just Say Yes by Snow Patrol), which you can listen to here. Hew debut single Once charted at number one in Official UK Top 40 the week it was released. It's really catchy and will get stuck in your head. Her debut album, Songs from the Tainted Cherry Tree, is out now and made number one in Official UK Album chart yesterday. She put her album up on her MySpace page the week before it was released so I enjoyed listening to it there and now it's released I can listen to it on Spotify. It took a few listens but I love it now. I'll buy the album at some point when it's dropped in price a bit so I can put it on my iPod but for now I'm happy listening to it on my laptop through Spotify. I was faced with a bit of a dilemma when I discovered that Diana would be performing at a venue in my local city tonight. I'd love to see her live but this concert was standing only and I know I'd be in a lot of pain if I attended a standing concert. So I was sensible and decided not to go. I'm hoping she'll do some seated concerts in the future, fingers crossed.

Mika's latest single, Kick Ass (from the film with the same title), was released about a week ago. Unfortunately it didn't chart within the Official UK Top 40 :( I've listened to Mika's music a lot recently as it works well to cheer me up when I'm feeling down :) Unfortunately I still don't seem to have learnt that listening to Mika late at night isn't a good idea because it make me go hyper, hehe :P

I've also enjoyed listened to Ellie Goulding's album, Lights. I'd not listened to it for a little while, but then I heard Under The Sheets when I was in HMV last week and it reminded me how much I like Ellie Goulding's music. I saw her interviewed and performing on a C4 programme called 5.19 a few days ago promoting her new single Guns and Horses, which hasn't been released yet.

Me and mum listen to the radio a lot and tend to alternate between Heart, Radio 2 and Radio 1 to avoid adverts, boring talking bits and songs we don't like. Mum enjoyed dancing to the radio the other day when Never Forget You by the Noisettes was played as it brought back memories of seeing them in concert :) I've been hearing a song called I Need You Now by Lady Antebellum on the radio a lot recently and I think it sounds just like Taylor Swift.

Some new videos I've seen on the music channels over the last few weeks are Turn It Up by Pixie Lott (which I love), All Night Long by Alexandra Burke (which I quite like, but I hate the rapping), Umbrella Beach by by Owl City (which is growing on me), Bittersweet by Sophie Ellis Bextor (which I don't mind), On Your Head by Tiffany Page (we saw her supporting the Noisettes and although her new song is catchy I'm not very keen on her) and Hearts Don't Lie by Gabriella Cilmi (I loved her first album, but don't like her new change of direction although On A Mission was catchy). I also heard JLS' next single The Club Is Alive on Radio 1 this morning although there isn't a video for it yet. I don't mind the singles that JLS have released so far, but don't like their latest one after the first listen.

I thought you might like to see some of my mum's latest knitting creations :)

An entrelac cushion for my uncle and aunt's 45th (Sapphire) wedding anniversary

A knitted string bag

An Adipose from Doctor Who

A handpuppet
(My mum helps out with organising shoeboxes filled with toys to go to children in war-torn countries each year at Christmas. They don't allow stuffed toys to be included unless they have a special mark on them to prove they're safe, so mum can't knit stuffed toys for the boxes. She thought she'd try to knit hand puppets instead as they don't include any stuffing.)

A very cute cat made from simple knitted shapes

A very cute tortoise for me (you can see how tiny it is in Alf's hand)

A turtle for Alf

Mum modelling her knitted moustache for my nan!

My blog is now pretty much up-to-date :) I've not blogged about today yet but I'll do another update shortly when I've got a couple of days to write about. And tomorrow I'm hoping to do a blog about ME Awareness Week 2010.

Getting up to date with April - part 8 (TV, DVDs and games)

Due to me not updating my blog for so long I've watched quite a lot on TV since my last update:
~ The first 3 eps of an interesting C4 programme called Young, Autistic and Stagestruck
~ 3 eps of Embarrassing Bodies
~ 2 eps of the Graham Norton show
~ Eps 2 and 3 of the great BBC series called GOS which visited a different department of GOSH each week. GOSH is what I've previously referred to as Hosp G, my old hosp. In ep 2 which was set in ITU they featured a surgeon called Mr Kiely who has operated on me in the past. And in that same episode I got annoyed at a doctor saying how dangerous hickman lines (tubes going into the heart to deliver artificial nutrition, I used to have one for me TPN) are. There are risks with them but they're not that dangerous! And ep 3 which was set in the renal department taught me a lot.
~ 4 eps of Dr Who - I like Matt Smith much more than I expected but I do miss David Tennant.
~ 3 eps of Outnumbered - I love Outnumbered :D
~ Parts of the news and election coverage
~ A BBC programme about preventable health problems in children called Spoilt Rotten?
~ 4 eps of Ashes to Ashes - I'm really enjoying watching this series and can't wait to see what happens in the final 2 eps.
~ A channel 4 documentary called America's Medicated Kids
~ The end of an episode from Gavin and Stacey series 3 that I caught as I was channel flicking.
~ 3 eps of Children's Hospital
~ An interesting BBC documentary called The Autistic Me - One Year On
~ 1 ep of Hospital Heroes - I wasn't very impressed with it though (it was too dramatic and repetitive) so didn't watch any more eps.
~ Mary Queen of Charity Shops revisited
~ Greatest Cities of the World with Griff Rhys Jones: Sydney - This was very interesting because rather than looking at Sydney from a tourist's perspective instead he looked at how life is for the people who live there.
~ Half an ep of Five Daughters - I didn't find it very gripping so decided against watching the rest of the series
~ The end of a documentary called The World's Fattest Families and Me with Mark Dolan
~ The first ep of a new BBC medical prog called Children's Emergency
~ Separate Lives: Tonight - This followed the story of conjoined twins and I found it very interesting but it was an ITV prog and throughout it I kept thinking that BBC would have done it better. At one point the parents got very upset when their sons were going into theatre and that made my mum upset because she could remember my dad getting very upset on one of the occasions when I had to go to theatre for a big operation when I was younger.
~ Miscellaneous bits on the music channels

On DVD I finished watching the first series of the Catherine Tate Show, rewatched series one and two of Jam and Jerusalem and rewatched episodes 1 to 4 of the first series of Outnumbered.

I've watched quite a few films over the last few weeks:
~ A Bug's Life - I love Pixar films but hadn't watched this for several years so enjoyed rewatching it.
~ Pay it Forward - An interesting premise for a film. Not amazing, but not bad. I was very surprised by the ending.
~ Jumpin' Jack Flash - I loved this film, it's really funny and Whoopi Goldberg is great.
~ My Brother Tom - Very thought provoking and quite odd.
~ Speed - I can't believe I'd never seen this Sandra Bullock film before, it's very good.
~ 50 First Dates - Funny romcom.
~ Orphan - Very good horror film and not too scary although it did scare me. I loved the twist as I was nowhere near to guessing it.
~ Julie and Julia - Very interesting and well made. Mum really enjoyed it. Maybe a bit too long though.
~ An Education - What a great film, Carey Mulligan is a brilliant actress. Watched this with my mum and Claire and we all loved it.
~ Shakespeare In Love - Better than I expected, but not really my kind of film - it was mum's idea to watch it.
~ The Hangover - I saw this in the cinema last year so enjoyed rewatching it with my parents. We all found it hilarious, great for a laugh.
~ Zombieland - Funny and engaging but there was a bit too much blood for my liking in some parts.

I've watched a few videos on the Internet since my last update, most of which were about Outnumbered. I saw the cast being interviewed on Jonathan Ross, the children and one of the writers being interviewed on the One Show and the footage of them winning 3 British comedy awards on Youtube. A friend gave me a link to a very funny French and Saunders' Madonna Parody on Youtube which you can see here.

Sorry if I'm repeating myself (my memory isn't very good at the moment so I can't remember whether I've already said this or not) but I've recently found a great price comparison website for DVDs which helps me to find the best prices for any DVDs I want to buy online. You can see the website here, you might find it useful too.

I think I've said previously on my blog how my parents have a good comfortable pair of headphones with a long cable. Me and Alf both use the headphones but we're struggling to share them as we both want to use them in the evenings so we can watch TV/films/play computer games while our parents are in bed. I think I should get to use the headphones because Alf can still play his computer games and watch his films without headphones without disturbing my parents if he turns the volume down a bit. But even with my TV on the lowest volume I can hear it on it still disturbs my parents through the wall. And I can't plug my earphones into my TV and sit on my sofa and use them because the cable is too short but Alf could easily use his earphones for listening to his computer. Anyway this makes no difference and we still have to share them. To get round this problem I bought some headphones from Amazon for myself because Alf has no money so there's no way he'll be able to buy himself a pair. However I didn't find the headphones comfortable so have sent them back. Now we're back to the same position of struggling to share our parents headphones again. I'm not very good at adapting to new things so would prefer to stick with the headphones that I know are comfortable for me. I've tried to track down another pair of them but they're not being made any more and I can't find a second hand pair on eBay or anything like that :(

I've not played on my PS2 much since my last update but I did try the race mode on Frogger with dad. He was rubbish - I won 10 nil! I received a new Wii game called Boom Blox Bash Party in the post after ordering it from Amazon. I've tried that out against dad but he's much better at it than me because it's physics based. The day after we played for about an hour together we both had Wiinjuries - a sore right arm from the throwing action required in the game. I've continued to play on New Super Mario Bros Wii a lot, both with Claire and on my own, and was very happy to complete the main game :D However there are still extra things to unlock so me and Claire are still enjoying playing on it.

I've also enjoyed doing some crosswords with mum recently :)

Getting up to date with April - part 7 (more day to day stuff)

I decided on Tue 20th that I would let myself buy some more DVD boxsets if my total spending (not including rent, Tesco DVD rental and magazine subscription - my regular monthly payments) in April didn't exceed an amount that I set then based on what I'd spent so far during April. I thought that I'd let myself buy some DVD boxsets to take my spending that month up to the amount I set, but I ended up spending only £5 less than that amount which wasn't enough for a DVD boxset that I wanted. However I had had some unexpected outgoings towards the end of April including Alf choosing to cash his birthday IOU for an iPod charger so I decided to allow myself to spend a bit more than £5 on a DVD. I struggled to choose between Gavin and Stacey series 2 and 3 or Outnumbered series 2 and very nearly bought them all at once. But on Sun 2nd I decided on Outnumbered and ordered it that night. I'll get the Gavin and Stacey DVDs at another point, maybe at the end of this month/start of next month if I don't spend too much this month (I might aim to spend less than last month).

Mon 3rd May was Bank Holiday Mon so there were some local carboot sales on that me and my parents decided to have a look at. First we went to a one off carboot sale in a pub carpark in a neighbouring village. There I bought a DVD called In America DVD for 50p, 7 DVDs that had been free with newspapers for a total of £1 and 15 CD cases for £1. It was very chilly while we were looking round and there were some light showers too so I left my parents still looking round and went back to sit in the car round the corner to warm up. While I was sitting in the car another shower started up which got quite heavy and then it started hailing. I was very smug sitting all warm and dry in the car. Dad sensibly found some shelter in the pub car park til the hail eased but mum decided to run back to the car in it. She got soaked!

We then went back home and dropped dad off because he'd decided the weather wasn't good enough to go to another carboot sale. Mum changed out of her wet clothes, we both wrapped up a bit warmer and then we headed out to the carboot sale we usually go to. There were not as many stalls there as there usually is and the DVDs were all £2 each rather than £1 each so I didn't buy anything. Mum picked up a few things though including a weird thing that moos like a cow! On the way home we called in to visit nan briefly and give her back her mobile phone that we'd sorted out for her. The phone in her new flat wasn't going to be reconnected til Wed so it was important that she could use her mobile til then.

On Tue 4th May I weighed myself like I'm now doing fortnightly. It was also my monthly weight to email my dieticians with. My weight was 54.3kg - so up 0.6kg on the previous fortnight and up a total of 1kg in a month. Both my dieticians were very impressed and are happy for me to keep weighing myself and contacting them monthly. I never thought I'd say this, but I don't really want to put any more weight on now. If my weight is up again next month then I'm going to ask my dieticians if I can stop my high calorie puddings because I don't really like them.

That morn I walked to the post office and the local shop and also walked round to the surgery to drop in a prescription for me. That aft I had to return to the local shop when mum discovered that she'd run out of washing liquid for the washing machine. When mum got back from work at the library she showed me her first knitting needle injury - somehow a knitting needle had attacked her leg through her bag and her jeans and had left a visible scratch. Her leg is fine now though.

That evening I went to another meeting of the teenage discussion group in the village. V wasn't there so it was just A and B who lead it, me, K and M. The discussion on Tue eve was very religious - yawn! We did have some interesting discussion, but I'm not sure how we got onto talking about whether knitting is divine or not?!?! Although I'm a very private person about my health I don't mind mentioning it when it's my choice and in my control, so I brought it into the conversation because I felt it was relevant. I started off by saying "I don't know how much you know [because I didn't know if K or M knew anything about my medical history] but I had a transplant a few years ago" I know A knows about it all because she knows my mum and I assumed A had told B everything. So I was really surprised when B said that she didn't know that! We had an interesting discussion about politics at the end. K isn't 18 until the summer so can't vote yet, but the rest of us could. Me, A and B all said that we would be voting Lib Dems and proceeded to discuss all the parties. M kept very quiet. He's very posh, privately educated and quite stuck up so I assumed his quietness was because he's a Conservative supporter! They were all talking about the different politicians they've had coming to their doors to try to swing their votes, but we've not had any of them this year which is probably because we've got a Lib Dems sign in our garden :)

Yesterday (Wed 5th May) I emailed S (the transplant co-ordinator at Hosp A) again because it was 6 weeks since she'd promised me an email and I'd still not heard anything. In this email I just asked if she could please reply to my email from March 22nd as she said she would in her email dated March 23rd. She replied very quickly saying that she'd not forgotten me but she'd been off work for a while. I've been promised a full reply by the end of the week so hopefully I will get that. Only 5 weeks to go til my transition is due to be completed and I'm still no happier about it, eek! I wish S had just dropped me a quick email letting me know that it would be a while til she managed a full reply. Replying 5 weeks later than promised isn't really fair on me - I'm supposed to be learning to trust this team!

Yesterday morning I got up at 8.45am (which is very early for me) because I'd heard the previous day that the presale for Marina and the Diamonds' Oct/Nov tour would start on the Wed. However it didn't say a time, so I got up so I could be at my laptop by 9am in case they went on sale then. I kept refreshing my email page because the link would be sent to me in an email and the email eventually came through at 12.30pm - I'd been sitting there all that time! And as you'll have seen from this blog post, I got tickets!! :D

In the afternoon me and mum popped round to see my nan because although we'd returned her mobile phone on Mon we'd forgotten to return the charger too! I helped my nan sort out a few things on her computer while we were there. And on the way we called in at the local garden centre where mum bought some geraniums for the garden. I tried to persuade her to buy the red ones but she chose some pink ones instead.

Yesterday I discovered that my phone was playing up as although I could receive phone calls and texts I couldn't make them, it kept saying there was a connection error. I phoned my older brother Chris who knows about these kind of things and left a message on his answer machine asking for help. Also my phone alarmed low battery even though I'd charged it recently so that made me wonder if there was a problem with the battery too. The battery has seemed fine since though, so maybe it was just a one off thing.

Dad pointed out to me that there was a double page article in the local paper about ME so I found that to have a read. The article started off well but then went on to say how this sufferer had been cured by something called the Lightning Process and had then gone on to train as a teacher of the Lightning Process. There isn't a cure for ME although there are lots of people offering expensive cures that have no scientific evidence behind them. The Lightning Process is one of the most well known and some people are apparently miraculously cured by it although it sounds very doubtful to me. It costs a lot of money and there are lots of criticisms of it and no scientific proof that it works. So I thought it was a shame that the article in the local paper was so much about what a great cure the Lightning Process is. However, there was one small paragraph about criticisms of it, so at least they were acknowledged.

Today I got up early (9am) and me and mum headed into the city. We drove to the Park & Ride on the outskirts of the city (dropping Alf off in a local town on the way through) and then got a bus into the city centre. I enjoyed listening to Marina and the Diamonds on my iPod on the bus journey. Me and mum went on a long walk out of the city centre along a road with a few charity shops on. I bought 2 cheap books in one charity shop - one was a children's book that I used to like and one was a quick read. We stopped for drinks and then wandered back into town although we did have to ask for directions on the way! We walked for about an hour and a quarter in total then, which I was quite impressed with. When we got back into the city centre we met up with mum's friend for lunch in a cafe. I had a baked potato and we all chatted together. On the way out of the shop I picked up a local magazine because it had an interview with Diana Vickers in it. My tummy pains were bad while we were out :(

Me and mum then split up so she could go to her wool shop and I wandered round the shops but didn't buy anything. When me and mum split up I decided I'd better check to see if my phone was working and to my surprise it was :) So I'm not sure what the problem had been - maybe a network problem. I received a lovely text from Lizzy saying thanks for Mia's presents :) When I'd finished wandering round the shops I wanted to look in I still had a bit of time before I was due to meet up with mum so I found the films section in Waterstones and sat on a comfy sofa reading a book about Pixar animation :) Me and mum met back up, had drinks and some shortbread in a cafe (mum knocked our table which resulted in my glass of milk spilling over my jeans, whoops!) and went into a couple of shops (including M&S for some biscuits for me).

We then headed back to our car on the Park & Ride bus and then mum drove to Tesco on the edge of a local town where she had agreed to pick Alf up. Me and mum did a little Tesco shop while waiting for Alf. I was very pleased that I managed to resist buying Diana Vickers' album. It's on Spotify so I can listen to it for now without having the CD, so I decided to wait til the CD drops in price to buy it and be able to put it onto my iPod.

We dropped Alf off at home and went to our local Polling Station to vote. I saw the start of the BBC's election coverage and hope that the exit poll isn't representative of the actual results. The exit poll was created by asking random voters across the country who they'd voted for. And it suggested that we'll have a hung parliament with Conservatives getting the most seats, followed by Labour. It also suggested that Lib Dems will actually lose some seats. I'm supporting Lib Dems so I hope they do better than that. I do suspect that the Conservatives will win though :( I'm not watching the election coverage on TV tonight, I'll just check how the seats are going on the Internet before I go to bed and hear the final result when I get up tomorrow morn.

When we got home I saw my morning tablets out in the kitchen. I'd got up too early to take them this morn so put them out ready to take before we left the house. But I'd forgotten. Whoops! Think that's the first time I've ever done that. I took my Tac as soon as I got in plus the tabs that I only take in the morn and then tonight I took the tablets that I take twice a day minus my Tac. I think that should be ok as sometimes people have to delay taking their Tac if they're having a Tac blood test done at the hosp.

When we got home I also saw my post. Outnumbered series 2 on DVD arrived, so I'm really looking forward to watching that :) Unfortunately there was also something else waiting for me in the post. I opened it to discover my DLA renewal forms - arrrrgggghhh! The last time I applied for DLA was just after my transplant so lots of things have changed since then - my health problems related to my transplant have reduced but I've developed ME. Unfortunately people who have ME struggle to get DLA. I've got a few months to fill the forms out and dad said he'll help me with them, but I am still worried about it. I found the ESA forms hard, this is going to be even harder.

That's now my day to day updates completed but I'm going to do a couple more updates about other bits and pieces before my blog is completely up to date. It's definitely nearly there now though :)

Getting up to date with April - part 6 (more day to day stuff)

On Tue 27th April I didn't do much. I did pop out to the local shop though to buy the latest Radio Times and in the evening I helped Alf cash the IOU I'd given him for his birthday at the start of month. He didn't have an iPod charger of his own so kept borrowing mine. If I let him take it out my room he'd forget to give it back so I then told him that he had to use mine in my bedroom. That wasn't ideal though so for his birthday I gave him an IOU for an iPod charger of his own up to the value of £10. The official charger in the local Apple shop cost an astonishing £37, but Alf found one on Amazon that looked fine but wasn't branded for just under £5 (including P&P) so I bought that for him on Tue. When the charger arrived on Fri I was a bit nervous that it might not be compatible with Alf's own iPod Mini or might not work, but it worked fine :)

On the morn of Wed 28th April I popped round to the surgery to collect my new suncream. It's only factor 30 (my previous one that I reacted to was factor 50), but I guess that'll do. It's a huge heavy tube, so I wont want to carry it around with me when I'm out, but it'll be fine to put on at home or in the car before I go out. After that I phoned Barnardo's and talked to the deputy manager again. She said that they would have some work for me to do that day so I agreed to go in after lunch.

As we were heading out I got bad stomach pains but decided to go anyway and see how they were when I got to Barnardo's. They were still quite bad when I got there but I decided to start volunteering and I could always finish early if I was in too much pain. I volunteered for an hour and my tummy was very painful for the first half hour :( But fine for the second half hour :) It was much quieter than the previous time I'd been in and I liked that. However some furniture had been moved around in the back room so I had even less room to move! The only other volunteer in was the deputy manager and she was quite grumpy so I didn't manage to get into conversation with her. It was nice that the clothes I had to hang up were folded and piled on the floor rather than just thrown in a heap.

I then met up with mum and we went for drinks in a cafe in town. After that we looked in a few charity shops where I picked up an Agatha Christie short story book, a 4 DVD set of 80s films (containing Pretty in Pink, Ferris Bueller's Day Off, Some Kind of Wonderful and Planes Trains and Automobiles) and a CD of rainforest sounds which I thought I might be able to listen to when trying to get to sleep at night. When I was in hospital for my transplant I found a CD called Temple in the Forest on the ward, which contained relaxing music that sounded like a forest. That helped me to relax and get to sleep but when I listen to it now it brings back memories of hosp which doesn't help to relax me. So I was pleased to find a CD that looked similar that I thought I might be able to listen to instead. However when I tried it out I discovered that it wasn't music, it was just rainforest sounds. I didn't find it very relaxing to listen to as there was an annoying background chirping sound constantly and then every so often there'd be another animal noise over the top of that which would make me jump! Then me and mum did a supermarket shop before heading home.

On Wed eve Claire came round. We had a lovely evening chatting, having tea, playing on the Wii and watching a film together. A few months ago Claire had asked me about giving a talk on organ donation to some of the students she teaches. She works at a unit which teaches children who can't attend school for behavioural or medical reasons - I met her when she taught me when I was too ill to go to school before my transplant. I'd said I'd get back to her about it but it was just one of those things I'd not managed to get round to. So on Wed I asked Claire if there was still time for me to do this before the end of term. Claire said that'd be great so we decided on a date - Wed 19th May. I'll be speaking to up to twelve GCSE year students, so they'll be about 16. Before then I need to look through the organ donation resources I've got and check I've got enough leaflets, fluffy bugs etc and I also need to plan my talk. I'm confident giving talks to adults, but teenagers seem quite a bit more daunting. And then of course I have no idea how well I'll be on the day. But it'll be great if I can do it to raise awareness of organ donation :)

On Thur 29th April I slept through my alarm (which always goes off at 10.30am so I can get up in time to take my morn Tac 12 hours after my eve Tac) and didn't wake up til 11.40am! Whoops. That put me out of sync for the whole day :P In the post I received some raffle tickets to sell to raise money for AYME and a very cute sock monster that I'd ordered from Lou's Folksy Shop (you can also see Lou's blog here). That morn I wrapped and parcelled up Rosie's birthday presents before taking the parcel round to the post office to send off to make sure it reached Rosie in time for her 18th birthday tomorrow. I was very surprised that she actually received it just 2 days later (I sent it 2nd class)! I also wrote and posted a long overdue letter to Kate - my AYME buddy.

I had a lovely evening watching a film with my mum. Then I got a bit frustrated because Facebook was playing up, but luckily it got sorted out within a couple of hours. Me and mum discussed the possibility of going on a family holiday to Center Parcs later in the year, but she's not mentioned this to dad yet, so it's only a dream at the moment. I'll let you know if it progresses any further.

Thur was one of those days where I realised how fantastic some of my friends are. I got a lovely PM from Rosie as I do every day, when I asked Lou if I could buy another sock monster from her for Mia's 4th birthday she said that she was happy to send her one for free, I received 2 very understanding responses from Michelle and J (who I met at the PINNT meet-up) when I sent them both a brief email to them to let them know that it might take me a few days to reply to their emails and I also received a lovely eCard from Michelle :)

On the morn of Fri 30th April me and mum headed out to a local garden centre that also sells books, clothes, pets, crafts and food for a browse round. We had some drinks in the cafe there and I saw a cute ferret in the pets section. Mum bought some plants for the garden and we bought a new house card for nan in preparation for her move the following day.

After that we headed into town to wander round the shops and do a supermarket shop. When I say town I mean one of our two local towns, we don't go into the same town each time :P I bought a Some Like it Hot DVD in Cash Converters and a deodorant. I also picked up a free local magazine in a charity shop because it included an interview with Marina and the Diamonds. Mum rarely buys DVDs and if she does she buys cheap ones (either reduced or second hand), but that day she bought Avatar on DVD! Mum saw it at the cinema with Alf so she was keen to see it again and for me to watch it too. We've not seen it yet though. We ate our lunch as we were walking round. While we were in Sainsburys I spotted a funny sign on the box of a Wii game which said "Warning! This product contains a security tag which is NOT MICROWAVABLE" I'm not sure why anyone would try to microwave a Wii game! :P Mum said that apparently some security tags can be removed by microwaving the product which might explain that label, but I still thought it was funny.

That eve Chris and Sophie popped round again.

On Sat 1st May my nan moved to another flat in her building. The flat she moved to is more spacious and lighter (due to more windows) than her old flat. Dad and Alf went to help out with her move in the morn and were joined by my uncle Danny and his wife Diane. Mum was at work in the morn and I stayed at home because I wasn't feeling too well but we went to join them after lunch. I didn't feel v well while we were there so wasn't of much help but it was nice to see my nan and my uncle and aunt. The move went smoothly :) I was made official photographer, but because everyone was busy it was difficult to get good photos. I had a go though so thought I'd share a few with you :)

My mum looking like a pixie

My uncle Danny

Dad busy at work

Dad showing off the dancing he's practising for Glastonbury, eek!

Alf not very impressed that I'd taken a photo of him!

My aunt Diane with my mum

My nan

To be continued...

Organ donation in the news, trips out, an AYME meet-up and politics

Whoops for leaving it so long since my last update again. Looking at my notes from this week I think this update shouldn't be too long, but I never know until I've finished writing it, so fingers crossed.

At the end of last week I developed a rash on my hands and face after going in the sun, despite having factor 50 suncream on. At first I assumed it was a reaction to the sun, but after using a different suncream it seems more likely that it was a reaction to the suncream I used.

I forgot to weigh myself last Tue morn, so did it on Wed instead. My weight was 53.3kg, which was 0.3kg more than the previous week but exactly the same as the week before. It was the week I have to email my dieticians so I let them both know. My Hosp B dietician replied promptly and said she was impressed with how stable my weight was so would be happy for me to weigh myself monthly now. My dietician from Hosp A took a bit longer to reply as she was away for Easter, but she was happy with that too, so I don't need to email them my weight again until May. I'm a bit concerned about how much weight I could potentially lose in a month if I was to start losing weight, so I'm going to weigh myself fortnightly at home for the time being.

Last Wed I took some blood at home from a fingerprick and posted it off to Hosp B for them to check my Tac levels from. I also phoned them to let them know that the blood sample was on its way. I've not heard the result yet, so will chase them up about it later this week.

On Tue I got a phone call from the company who currently deliver my Tac asking how much I had in stock so they could decide if I needed another delivery or not. I was out at the time so they said they'd phone back the next day. They rang back on Wed while I was still in bed, so mum took the phone call. They'll deliver some more Tac a week on Wed.

Rachy is still continuing to make steady progress, so don't forget to keep following her updates here. Rachy had an article in her local paper last week which you can see here.

You may have seen that there was a story about organ donation all over the news yesterday. You can see the story on the Telegraph website here. It's a shame that the media seem to have completely blown the story out of proportion, I really hope it doesn't put people off registering to be an organ donor. You can read LLTGL's blog response here and Sarah has also written about it in her latest blog update here.

Once again I seem to have been quite busy since my last update. On Wed I went into Barnardo's for an hour. For the whole time I was there I was hanging clothes up, which got quite boring. It was very busy and noisy because there were lots of volunteers in. I was the only one doing any work though, the rest of them were just chatting. At least I didn't knock over any boxes of size cubes this time! When I'd finished I wandered round the charity shops in town. From Barnardo's I bought a copy of the DVD Nicholas' Gift which I'd rented and watched just a couple of weeks ago. I was pleasantly surprised to find that I get a staff discount of 20%. In another charity shop I picked up Jungle Book on DVD. I saw a PS1 game in a charity shop that I bought on eBay recently for significantly more money, but never mind.

On Thur it was lovely and sunny so me and mum decided not to go to the cinema but instead to wander round a local town that I'd not been to for a while. While we were out we stopped for drinks and found 7 charity shops :) In the charity shops I bought a book called Ten Thousand Sorrows by Elizabeth Kim for 75p, The Weakest Link PS1 game for £1 and 2 DVDs (Maybe Baby and Silkwood) for just 19p each as they'd originally come free with newspapers. In one of the charity shops I saw a woman who was there with her daughter. This lady was quite demanding with the shop assistants and rude to her daughter. When her daughter was talking to her she responded with 'Am I bothered?' just like the Catherine Tate character, but she wasn't doing it as a joke, that was her genuine response! :P While we were out we also bumped into a lovely nurse from Hosp H that we used to know well, so it was nice to have a quick chat to her.

On Fri morn before I got up, mum and dad went out to a fishing shop in a local city to look for a fishing bag to carry mum's giant knitting needles. They found the perfect one. Alf had planned to go to the cinema with his friends that evening, but they decided to go in the afternoon instead. They couldn't contact Alf because his mobile phone battery was flat, so they just turned up at our house at 12.30pm. Of course at this point Alf was still in bed, so there was chaos as he tried to get himself up and ready to go, especially as I was in the shower at this point! He got out eventually though and enjoyed seeing the film Kick Ass with his college friends.

On Fri aft Claire came round. We did lots of chatting, played a great card game called Ligretto, watched the DVD Coraline together and played on New Super Mario Bros Wii. As well as playing on New Super Mario Bros Wii with Claire, I've also played on it a bit on my own this week and am getting closer to completing it :) Claire is coming round again tomorrow and we're going to see if we can finish it, fingers crossed! I've bought myself a new Wii game this week from Amazon called Boom Blox Bash Party, so hopefully that'll be delivered later this week. I've not played on my PS2 for a little while, but am looking forward to playing on it again :)

On Fri night Alf went round to a friend's house in the village and none of us knew what time he'd be home. Usually we lock up and hide a key somewhere where he can find it to let himself in, but on Fri night the spare key seemed to have disappeared, so my parents decided to leave the door unlocked. At about 1am I was ready for bed, my parents were already asleep but Alf wasn't back yet. I didn't feel comfortable for the front door to be unlocked when we were all in bed, so I crept downstairs, found my spare key and put that out for Alf. I'd just locked the door and crept back upstairs and Alf came in!

On Sat I went to Lucy's AYME meet-up. To get there my parents drove me to a train station about 30mins away. I then got the train to Lucy's town, which took 40mins, where I met up with 2 other people and we shared a taxi to Lucy's house. There were 14 people (more than I expected) at the meet-up, so I became very shy and didn't talk much. I was very annoyed and upset at myself afterwards for that. No-one swapped seats either, so I didn't get chance to talk to some of the people I wanted to and one girl I was looking forward to seeing wasn't able to make it. I was quite tired while I was there, but I wasn't too bad. I'd not given my cat allergy a thought, but my eyes soon started watering thanks to Lucy's 4 cats! One part of the conversation that I found really funny was when some people started talking about blood tests. They'd clearly only ever had a couple of bloods tests because they were talking about cannulas blocking and needles missing veins like really unusual, traumatic events! I've experienced too many of them to count! I was quite tired when I got home, but felt ok the next day.

Yesterday morn some spare Glasto tickets went on sale. Dad had managed to get his and Alf's when they originally went on sale, but he'd not managed to get mum one. Luckily he got her one yesterday morning though. So at the end of June my parents and Alf will be going away to Glasto, which means I'll be at home alone for 6 days! That's exciting but a bit scary! If my health was better I might think about going to Glasto, but I'm not well enough to this year and to be honest I'm not too fussed about missing it - the yukky toilets, lack of showers and mud don't really appeal to me. So while the rest of my family are there in the mud I'll be watching the BBC coverage of it at home all cosy on the sofa :)

Yesterday morn we went to the local carboot sale again. It was much better than it's been for a while and I came home with loads. I bought a 500 piece dolphins jigsaw for 50p, a PS2 game (21 Card Games) for £1, a PS1 game (Harry Potter and the Chamber of Secrets) for 50p and 14 DVDs, all for £1 each! :D I bought 3 DVDs I've already seen - The Breakfast Club, Music and Lyrics and Rachel Getting Married. I bought 11 DVDs I've not seen before - The Pelican Brief, Brokeback Mountain, Clueless, Signs, The Blair Witch Project, Shakespeare in Love, iRobot, Becoming Jane, The Heartbreak Kid, P.S. I Love You and The Notebook. Mum bought the version of Pride and Prejudice featuring Colin Firth on DVD, some bits and pieces for herself and a book for me about films called Cinematherapy - The Girl's Guide to Movies for Every Mood, which was published in 1999, but still looks like I'll be able to get some DVD suggestions from it.

Yesterday afternoon we went to see my Nan but only stayed for about an hour and a half because dad wanted to get back to watch the football. Yesterday evening mum was listening to her iPod and was singing and dancing to Mika around the house and in the garden, but of course she was the only one who could hear the music! :P

Today my mum has gone to the library in the city to talk to an audience there about her knitting group to inspire them to set up their own. Mum wanted to take loads with her to show the people who come to her talk - her giant needles, lots of different types of yarn, lots of her knitted projects, a cushion she's just knitted etc - she'll be disappointed if only a few people turned up! She didn't have to carry her stuff too far as dad dropped her off as close to the library as he could, just outside the shopping centre that it's situated in, so she only had to walk through the shopping centre and up an escalator. To prevent her having to carry too many bags she put lots of stuff into a backpack. And she's got her giant needles in a fishing rod case. But she looks like a terrorist! Her backpack is one of the camouflage coloured Glasto ones and it's really big in comparison to my mum and the knitting needles in their case look rifle shaped! :P We were worried she might get arrested, but I've spoken to her on the phone and the shopping centre was very empty when she walked through it just before 9am this morning, so there was nobody there to get suspicious.

Last week dad heard that a local bike shop might have a vacancy so after much nagging Alf wrote them a letter to express his interest. Today my dad noticed that Alf had mistyped our phone number in the letter, so Alf phoned them to correct it. I've only been out to the surgery and local shop today. I've been relaxing this afternoon and don't have any plans for this evening. While I was writing this I had to go downstairs to ask Alf to turn his music down as even with my door closed I could hear it and it's horrible! So now he's very grumpy :P

On Wed there was an interesting piece on the local news about what the different political parties want to do about disability benefits. There was a disabled lady asking representatives from the different parties questions about how things will change for her if they get into power. This will be the first election I've been able to vote in, but rather than just copying my parents I wanted to know a bit about what the different parties believe and how their plans differ. However I struggled to find anything on the Internet that told me this in a way I could understand. A couple of days ago someone told me about a guide on the Telegraph website which helps you to find out how the different parties policies match your views. I didn't understand all of the questions in the guide, but I answered as many as I could. It said my views matched the Green Party 75% and matched Lib Dems 69%. My views least matched the Tories, but I didn't bother to include the BNP in my comparison. My parents vote Lib Dem and after looking at their policies in the guide I think I probably will too. The Telegraph guide is definitely worth having a look at, you can find it here.

I've not watched much on TV since my last update. When a programme name is displayed as a link on my blog, that link will take you to the place to watch it online if you're interested. I've watched Embarrassing Bodies: Charlotte's Story, the first episode of series 3 of Outnumbered (which was brilliant) and the second episode of series 3 of Ashes to Ashes twice :) I had to record Dr Who from Sat because I was out, but hope to watch it soon.

One of the DVDs I'm currently renting is the first series of the Catherine Tate Show, so I've watched the first 2 episodes of that. I've not decided what I think of it yet, but am going to persevere. Some of the sketches are funny, but some aren't.

As well as re-watching Coraline on DVD (which I love), I've also watched Sex and the City (which was better than I expected it to be), Little Women (the 1994 version with Winona Ryder, which was very good) and How to Lose a Guy in 10 Days (a predictable but funny romcom). I also attempted to watch The Pelican Brief, but wasn't able to follow it so I'll have to try it again when my brain is working a bit better.

On Tue night I listened to Taylor Swift through my pillow speaker, but it didn't help me sleep. On Wed I listened to some music from a CD called Temple in the Forest and I fell asleep while listening to that :) I discovered it when I was in hospital after my transplant and it helped me to relax then. A girl I know though AYME is very musical and she's recently released some of her music which is available to buy on iTunes or through Amazon. I'm not sure about her style myself but she is very talented so please have a listen for free on her MySpace page here. A few days ago I discovered that Marina and the Diamonds is performing at a festival that's just down the road from me this summer. I'm not well enough to go, but it's frustrating that she's coming so close yet I'm not going to be able to see her :( I couldn't see her on tour either because all the gigs were standing only. I think I might write to Marina and ask her to include some seated gigs in her next tour ;) Ellie Goulding's latest video has just been uploaded to Youtube today. The song is called Guns and Horses and will be released next month. You can see the video here.

I've also done some crosswords with my mum and some Sudoku.

Long update part 1

Sorry that I've not managed to update my blog for a little while. The update I've written is too long to post as one, so I've just split it in half and will publish it as 2 posts. Part 2 will be posted up tonight. So here's part 1...

My health has been quite up and down since my last update. I'm used to good weeks and bad weeks or good days and bad days, but this week I seem to have been going between feeling great and feeling awful within the same day. I'm finding this really frustrating, at least if I used to wake up feeling good I'd know I'd feel like that all day, but now I don't even know that. It's making it very hard to plan anything too. When I say I feel awful I often have a headache and/or a tummy ache and feel exhausted, just too tired to do anything. Last Mon morn I felt awful, I was worried about a few different things, I felt down and completely exhausted. I felt better that afternoon though after going back to sleep for an hour and a half. Tue was generally a good day but I became very exhausted at one point. This Sat just gone I felt ok in the morning, completely exhausted in the afternoon (which resting in bed for an hour listening to music didn't help at all) and fantastic in the evening! The rest of the days have been more stable though.

My tummy pains have been very bad some days, so I don't think the Amitriptyline is working. I tried the Spasmonal first for one week and then the Amitriptyline for a fortnight. A couple of days ago I started back on the Spasmonal again but am going to continue the Amitriptyline and see if taking them both together helps. Hopefully it will.

My nocturnalism seems to have been as bad as ever despite the Amitriptyline, I've had a few earlier nights but the late nights have been 3am ish. My younger brother Alf has stayed up through the night twice this week. This isn't when he goes out, this is when he's at home, but he just doesn't sleep all night. Think it's because he's bored and it seems a good idea to a teenage boy! His sleep pattern is now even more messed up than mine!

My weight last Tue was down a little bit from 53.3kg to 53.0kg, but that small decrease is nothing to worry about. I forgot to weigh myself this morning to email my weight to my dieticians, so I'll do that tomorrow morning instead.

My Hosp B consultant said at my joint clinic last month that my bloods can go back to 3 monthly now as all of the previous results were within the normal range. That means my next blood tests should be in June. However a couple of weeks before my last set of bloods were taken (at the start of March), my Tac dose was lowered from 2mg twice a day to 1.5mg twice a day because my last Tac level had been 13. My normal range is 5 to 8, so luckily when my bloods were last done my Tac level was about 5. However because it dropped from 13 to 5 in just a couple of weeks on the new dosage I'm worried that since then it could potentially have dropped more (making it too low) and that wouldn't be picked up til June. So I've decided I'm going to take some blood via a fingerprick this week (probably tomorrow) and post it to Hosp B for them to process for my Tac level.

Rachy is still making good progress since her transplant. You can keep up to date with her news here.

Recently there has been an announcement about a slight change in the way organ donation will now work in the UK. You can read more about it here, but put simply it means that under some rare circumstances organ donors or their families will be able to request to donate organs to loved ones. I was quite against this change when I first heard about it, but Emily wrote a great explanation of it which has reassured me:

"For those concerned about requested allocation...

Here's what the announcement means as far as I understand it:

Scenario: a woman dies in a car-crash. Her daughter is in need of a new liver. Previously, this would have absolutely no bearing on the organ allocation, despite the obvious wishes of the deceased being to save her daughter, as well as it being of psychological benefit for the donor family.

What has happened is that they have created a clause to allow medical professionals to acknowledge this exceptional circumstance. It's extremely rare, but similar scenarios have happened. It is not a change in the system, it is to legally allow some flexibility in highly specific cases.

Sally Johnston says: "This guidance will enable us to consider, as we always do, what the donor wanted but also to take into account the health and wellbeing of a sick patient who is known to them."

It is another minor adjustment in the laws surrounding organ donation to try and acknowledge the complexity and individuality of each and every case.

I hope that makes more sense - I was somewhat alarmed when the journalist first explained it to me but on reading what it actually entails I don't see any problem with it."

On Sat (27th March), me and mum went to the cinema to see The Blind Side. I think maybe I'd been expecting too much from the film after Sandra Bullock won an Oscar for her performance in it, but it was a very good film, if a little long. It's quite an American film, I didn't understand the American football stuff at all, but luckily that didn't seem to matter too much. Some of the lines were very funny too and made me and mum laugh.

On Sun (28th March) me and mum went to browse round the local weekly carboot sale. It was better than the previous week, but wasn't great. I did get some bargains though - a PS2 game (Harry Potter Quidditch World Cup - to convert Claire, who loves HP, into a PS fan because she currently hates them due to her ex spending more time playing on his PS than with her), 2 PS1 games (Tomb Raider and Spyro Year of the Dragon) and 3 DVDs (Sliding Doors, the first Pirates of the Caribbean film and Mickey Blue Eyes) totalled me just £5.20 :D I spotted one of the stalls that I'd previously bought a wrong region DVD from, but I didn't have it with me to ask to swap.

That evening Claire and her mum came round because they'd not made it round the previous Friday. They could only stay for a couple of hours before Claire's mum had to head home, but it was really nice to meet her for the first time.

Last Tue (29th March) I only went out to the local shop to buy a Radio Times. That afternoon I really enjoyed chatting to Lou on MSN and my older brother Chris popped round briefly to borrow my USB memory stick

On Wed me and mum had been planning to go out to a local city, but after seeing that the weather forecast predicted low temperatures and rain we decided to go to the other nearby city instead because it has an indoor shopping centre where we could shelter. We thought we might go on the train but ended up going in the car instead. While we were out we stopped at W H Smiths for drinks and to eat our lunch, but I was told off for eating my own sandwiches in there! My tummy was very painful while we were wandering round the shops :( I bought a Meryl Streep DVD called First Do No Harm in a charity shop for just 25p - bargain! I also bought a pillow speaker from Maplins to replace my pathetic pillow speaker. The new one is much better - to hear the music from my old one I had to put my ear in a specific position on the pillow, but with my new one I can hear the music when my head is anywhere on the pillow :) You can see it here (and it does work with an iPod). The only other thing I bought was 2 copies of the Pick Me Up Spring Special. This isn't a magazine I'd usually buy, but Holly S has her story in it (and it's not completely over the top like stories in these magazines usually are)! I'm in one of the photos she's included :) If you can find a copy in a shop, Holly's article is on page 57. At the end of the day my heels were sore and I was quite tired, but I had a lovely time. The other day my dad picked me up some memory foam shoe inserts, so I'm going to try them for my heels. My dad also got me a lockable cash tin this week (he had it at work, but it wasn't being used), so I can safely lock my money away again.

Thur was April Fool's Day. Two of the best April Fools I found on the Internet were Google's which can be seen here and the Guardian's which can be seen here.

On Thur I went to Barnardo's in town. On the way I called in at a games shop and traded in 3 out of 5 of my unwanted PS2 games (they didn't want 2 of them) for £8 in-store credit and bought some very pretty reduced greetings cards in Oxfam. I got to Barnardo's for 11am like I'd said and was met by the manager who I gave in my application form to. Firstly I was shown how to steam the clothes and left to steam a rail of clothes. Then the manager went through all the health and safety stuff with me before showing me how to hang the clothes (which hangers to use for which clothes and where to find the cubes with the sizes on to put on the hangers...) and I then hung lots of clothes. It was ok, but a bit monotonous. And it was tiring because it was a new environment and I was on my feet for the whole time (just over an hour). I did have a little accident when I tipped a box of a few hundred little black size cubes off the surface and all over a pile of clothes on the floor. So when my mum came to collect me (because I was very tired) I was on my hands and knees trying to pick all these little cubes up! :P Apparently I wasn't the first to do that though, hehe. All the other volunteers were really nice and the girl out the front looked about my age so I'm hoping to chat to her a bit more next time I see her.

On Fri me and my mum went to visit my Nan. She's lovely but hard work! After having her current TV for 2 years she'd just discovered that it has built-in Freeview so she asked me to teach her how to use that and I also showed her how to access the radio channels on that. Then I taught her to use her DVD player/recorder to play DVDs and CDs. While I was doing this she wanted to know what every button on each remote did! She also asked me to teach her how to record on her DVD recorder, but I said that would have to wait til next time! I'm not sure how much she'll remember but I did write some key points down, so hopefully that'll help her. When I was writing the notes my hand went very shaky (I suspect that was because of my Tac or maybe just because I was tired), so I hope she can read them ok. I also showed my Nan my iPod (Classic) because she'd never seen an MP3 player before. She couldn't understand how the sound quality on it would be any good, so I said she could have a listen. When I offered her the earphones she had no idea how to fit them in her ears because she'd never used them before! Once we got it sorted she loved listening to my iPod. I played Love Story by Taylor Swift on it and her feet were tapping along and she was shouting excitedly to us :D

Very excitingly, Fri night marked the return of Ashes to Ashes. I've watched both series of Life on Mars and both previous series of Ashes to Ashes and have them all on DVD. I think Life on Mars and Ashes to Ashes are definitely my favourite TV programmes ever. I can't decide which I like best though - I liked the freshness and originality of Life on Mars but I really like that the main character in Ashes to Ashes is female. I'd been eagerly anticipating the first episode of series 3 (the final series) of Ashes to Ashes on Fri and luckily it didn't disappoint, I thought it was a great episode and a very strong start to the series. If you've not yet watched it but would like to, you can see it on iPlayer here. Now don't read any further if you're a fan and haven't yet seen the first episode because the remainder of this paragraph will contain spoilers. Episode 1 raised lots more questions, my parents were completely baffled. Hopefully things will become clearer as the series progresses but I know yet more questions will be raised before we get answers. I can't wait to find out more about where the series is going to go and how Sam Tyler is going to fit into it. I think in that episode they were trying to make us think that Gene killed Sam, but I'm sure he wouldn't have done. I suspect he knows more about Sam's death though. I also wonder if maybe Sam isn't really dead, because his body was never found. Who knows! I'm not sure how the man that kept appearing to Alex was, that wasn't Sam. I assume that was the body that was discovered on the TV too but I'm not sure where that fits yet. Maybe Gene killed him. I was really disappointed that Chris and Shaz had split up :( From the clip of next week's episode it looks like Shaz is going to leave, I really hope not. I loved the use of music again, Sweet Dreams when the Quattro was unveiled was great. And the lines seem to be as sharp and funny as ever, I loved Gene's suggestion to Ray about hazelnuts and squirrels, hehe.

Continued here.