My week

Sorry I've not updated for a week, this update might be a bit long but I'll try not to ramble too much! :P In between blog updates I save rough notes of what I've been doing so I can remember what to write about when I come to publish my next blog update. My notes for this week look quite overwhelming, but I know the longer I leave it the more daunting it'll get! So I'm currently listening to a Radio 2 programme on iPlayer presented by Mika (you can listen here) and I'll attempt to write a blog update that makes sense :)

On Wed after I'd written my last update, one of the liver nurses from Hosp B phoned me back. The nurse I spoke to said that my consultant was away so she couldn't ask him why I needed the heart scans and she didn't know the answer. But my blood results looked good. She asked me to phone back on Mon (yesterday) to remind her to ask my consultant about the scans when he was back in, so I did. I also asked some more questions - what were my biopsy and kidney test results from my MOT last month and did my scopes show any causes for my tummy pains, what was my latest Tac level, what should my Tac dose now be and when do I next need bloods repeating? The nurse I spoke to said that my last Tac level was 8.2 (my target level is 5 to 8) so she didn't think that my dose would need to be altered. And she said she'd put the other questions either to Dr G (my consultant) or Dr B (another consultant I know) at the weekly meeting on Wed and they'd phone me back as soon as they had some answers for me.

My Tac level had previously been stable for a long time and so my dose had stayed the same. But as my dose was doubled a couple of weeks ago, a few days ago I was putting out my tablets for the week and realised I was running very short on Tac. I get all the rest of my tablets from my local pharmacy, but my Tac is delivered by a healthcare company. I knew I didn't have a delivery coming up, so yesterday I phoned them and explained that my dose had recently been doubled and so I only had 12 days worth of Tac left. I thought it would be simple to get some more sent out, but no. They asked who had changed my Tac dose, so I said Hosp B, and I was then told that they would have to send some paperwork to Hosp B for them to confirm that they had in fact doubled my dose! Then once the paperwork is sorted they'll be able to phone me up to arrange a Tac delivery. I stressed that I only had 12 days of Tac left, so hopefully I'll get a delivery in time! Fingers crossed.

Last week my dietician confirmed that my feed plan was still the same (stay on 3 nights of overnight feed til my weight reaches 51kg and then try without feeds) and said that the new high calorie drinks and puddings for me to try should be delivered soon. I suspect that my current high calorie drinks are still making my tummy worse even though I'm now drinking them more slowly and diluted with cow's milk.

In response to my question about trying excluding foods from my diet, my dieitican was worried that this might make me more reliant on overnight feeds, so suggested that first I should try keeping a food and symptom diary for a week. I'm going to start this diary next Sun and my mum is going to help me with it - in it I'll record what I eat and drink, times, amounts, ingredients and cooking methods. And I'll record every tummy pain I get. Hopefully the diary will show some sort of pattern to my tummy pains and maybe suggest what is triggering them.

I weighed myself again this morning and my weight was up slightly to 50.8kg. So I'll stay on my overnight feeds for now, but my weight is getting close to 51kg :)

My nocturnalism was a bit more extreme than usual Sat night and Sun night, I got to sleep around 2am both nights! But last night I made a huge effort to get into bed earlier and I think I fell asleep around midnight :) I've been getting up between 10am and 11.30am most mornings but managed to get up just before 10am this morning. So fingers crossed I'll be able to keep this better sleep pattern up.

There has been lots of news on friends in the transplant community this week. In this update I said that Imogen had received her call. I've not heard any news since because I'm not in touch with Imy's parents, just her. So I wont hear anything until she's feeling well enough to text. I might try phoning her hospital though (which is a different hospital to mine) to see how she is. I'm not sure if they'll be able to tell me anything though. And we have one mutual friend, so I've asked her if she knows anything.

And yesterday morning I gave this update on M and Jess. After I posted that yesterday I heard more from M's mum. M's breathing continued to improve so she's now off the oscillator and just on a ventilator :) She's losing a lot of blood from her bowel though so the doctors were thinking of taking her to theatre today to try to slow the blood loss. But because the rejection can't be got under control M is going to have to have her bowel removed in theatre in the next few days and then at some point she'll have to be relisted for a second transplant :(

Jess is stable and managed to get out of bed and sit in a chair (with assistance) yesterday :)

I had a very busy day on Thursday. I had to get up at 8.30am and set off for the orthodontist (at Hosp A) at 9.30am. My orthodontist wasn't as rude as he normally is and talked to me to tell me what he was doing. He was happy with my progress so swapped my wires for some slightly thicker and less flexible ones. And he showed me how to use little elastic bands in my mouth too. Together the new wires and the elastic bands should help to close the gaps from my extractions in the summer. My teeth are now straight, so once the gaps are closed that'll be my orthodontic treatment finished. My mum asked how long he expects that to take and he said that as long as I wear the elastics properly then it should just take 6 months! I'm very happy with that because I've only had my braces for 9 months and was originally told I'd need them for 18 to 24 months, so if I just have them for another 6 months then that's not as long as I'd expected :) I can't wait to get rid of them because without them eating should be easier and people will hopefully stop thinking I'm 15 or 16!

The elastic bands felt very odd to start with in my mouth because I wear 2 at a time and each one goes from a tooth in my top jaw to a tooth in my bottom jaw. I was told I needed to wear them for at least 18 hours a day, but am wearing them for almost 24 hours a day with no problems. They do sometimes snap or ping off when I'm eating though and I think I've swallowed at least one so far! :P And the tighter wires made my mouth very sore for a few days, especially when I ate, so I was taking Paracetamol regularly for a few days. But my mouth is feeling much better now :)

After my orthodontist appt on Thur morning me and mum got a bus into the city centre. We had baked potatoes for lunch and then went round the shops to look for me some boots. I think my feet must be very odd shaped because I tried loads of boots on which didn't fit. And the size of my feet seemed different in each shop - ranging from 3 and a half to 5 and a half! Most annoying were the shops where the size 4 boots were too small and the size 5 boots were too big, but they didn't do half sizes. Eventually I found a lovely pair of boots which seemed to fit much better. What do you think of them? I bought them although I've never spent that much on footwear before! I've not worn them outside yet, I'm going to wear them for a bit around the house first to make sure that they fit comfortably.

On Thur night I didn't do anything to celebrate New Year. Alf went out with his friends, but I just stayed at home with my parents and we stayed up watching TV til about 1am. At about quarter to midnight on New Years Eve dad told me that exactly 20 years ago I'd been conceived! Not sure that I needed to know that!

After such a busy day on Thur I was exhausted. I expected that but didn't expect that I'd feel so awful on Fri, Sat and Sun! So I didn't do much at all. I felt a bit better yesterday morning but after helping my mum sort out her photos on the computer (I put them into more sensible folders than the automatic computer ones so she can find them) and loading some of them onto the knitting social networking website that she uses, I felt exhausted! So I didn't feel up to going out with mum to visit my Nan in hospital yesterday. Hopefully we'll go and visit her this afternoon though. Still no news on what the problem is, but I think she's stopped having the dizzy spells now.

On Wed I received a Christmas present from my friend H. We didn't manage to meet up over Christmas but because both of our mums work in libraries in the county we wrapped each other's presents up, disguised them as important library stuff and then sent them with the library deliveries! And it worked. H got my present just before Christmas but she sent hers a bit late, so I received it last week. It was a very pretty red and puple cushion. I didn't think it'd go in my blue and purple room, but it does :)

My mum's birthday isn't til March, but I was looking on Amazon on Sunday and found 2 DVDs I thought she'd love so I bought them for her :) I bought her Paint Your Wagon, because she loves that film but only has it on VHS not DVD, and the complete collection of Dinnerladies because she really enjoys watching old episodes of it when they're on TV and really likes Victoria Wood. So that's mum's birthday presents sorted :) I've got a few people's birthdays coming up in the next few months so am trying to get organised with presents - it's my cousin Tam's birthday mid Feb, mum, Alf and Lizzy's birthdays in the first week of March and Claire's birthday in April. And mother's day in March too.

I heard from my friend F on Sunday. She asked if she could pop round yesterday with my Christmas present, so I said yes. Then I realised that I'd not been expecting a Christmas present from her, so hadn't bought her anything! But I found a lovely incense gift box in my present drawer so wrapped that up for her :) F didn't make it round yesterday because she was ill, but is hoping to pop round later in the week when she feels better.

Me and mum took all the Christmas decorations down on Saturday. It's sad now Christmas is over for another year. There's always such a big build-up to Christmas and then suddenly it happens and is all over! :(

My uncle (dad's brother) phoned up this morning and asked me to give a message to my dad. My uncle was supposed to be visiting my Nan's house today to try to sort her out with a new bed because I think her current bed is too high. But my uncle said he couldn't do it because he was snowed in. He only lives about 20 miles away, yet he's snowed in and we've got no snow at all! I've just seen lots of messages on Facebook about snow and saw the news about all the chaos it's causing, but we've not got any at all. And the Met Office forecast doesn't predict we'll get much at all.

I mentioned on my last blog update that I'd been thinking about getting a hobby and felt very inspired. On Wednesday evening I went through some of the big plastic boxes under my bed that are filled with craft stuff and also looked at some craft websites that friends had recommended. After my busy day on Thur I felt awful so haven't really had the energy to get excited about it since. But I will get myself a hobby.

I've continued looking at what the iTunes 12 Days of Christmas offer is giving away each day. Most of the downloads I've either not wanted or have been applications that wouldn't work on my iPod classic. In my last update I said I'd downloaded 2 music videos (a live Robbie Williams performance and a JLS music video), but they'd been slow to download with our Internet connection. Since then I've downloaded a 30 minute episode of Outnumbered (which I've never seen, but Outnumbered is supposed to be good) and a short film called Peter And The Wolf (which had good reviews). I've not got round to watching either of them yet though. Outnumbered took absolutely ages to download. I started downloading it about midday and when I went to bed about 12 hours later it still hadn't finished so I left my laptop on and it finished downloading overnight. And I started downloading Peter And The Wolf just after midnight one night and left my laptop on when I went to bed so it finished downloading overnight.

Because I've had a few days where I've felt awful this week, I've watched a lot of TV and DVDs.

The films I've watched are:
~ Miss Congeniality 2 - which I quite liked but it isn't nearly as good as the original Miss Congeniality. I love Sandra Bullock :)
~ 17 Again - I was surprised at how good it was, but it was very American
~ Raising Helen - This is a great film and I'd recommend if you've not seen it. This also has one of my favourite actresses in it, Abigail Breslin, but she was very little (and very cute) when this film was made.
~ Pride and Prejudice - I started watching this with mum yesterday but struggled to follow the dialogue because I wasn't feeling too good. We'll finish it together soon. I quite like Kiera Knightley. And I was surprised to spot Carey Mulligan (from the Doctor Who episode Blink and the film An Education) in it. Keep an eye out for her, she's going to be huge.

And the Julia Roberts boxset that I bought from Amazon arrived yesterday so I'm looking forward to watching some of those films. And I looked through lots of old Radio Times magazines and picked out the interesting looking films to add to my rental list. St Trinians has just been posted out to me, so I'm looking forward to watching that when it arrives because I've not seen it yet.

The Gavin and Stacey DVD I persuaded mum to buy arrived in the post last week so we've watched 4 episodes of it so far. We all really like it, so it's great to have found a programme we all enjoy watching together :) And we've ordered the 2nd and 3rd series on DVD from the library. I've also watched one episode from the first series of Dragon's Den as I'm renting that at the moment. And I've watched 8 more episodes (plus some out-takes) of Absolutely Fabulous this week :D

And on TV I've watched:
~ The episode of Absolutely Fabulous titled Gay - it was on TV last week. I loved it but I'm a big fan of Absolutely Fabulous and over the last few months have watched almost every single episode :)
~ 3 Men Go To Ireland- the first episode was very funny. I've not watched the second episode yet though.
~ New Year Top Of The Pops - it was ok, but some of the performances were repeated from the Christmas special which I'd watched.
~ Jools's Annual Hootenanny - I didn't enjoy all of it, but some of it was good. I especially liked Boy George performing Karma Chameleon and Shingai (from the Noisettes) performing Don't Upset the Rhythm. Can't wait to see The Noisettes in concert next month :)
~ Who Do You Think You Are with Julia Sawalha - it was quite interesting, but I wanted to know a bit more about Julia (who I like from Absolutely Fabulous).
~ Doctor Who: The End of Time Part 2 - I struggled to follow it because I was feeling really rotten that day. What I understood I liked though. I'm not keen on what I've seen of the new doctor so far, I don't think he'll be as good as David Tennant.
~ Alan Titchmarsh Show - I'd recorded this episode before Christmas but skimmed through it to see Pixie Lott performing.
~ Film 2009 - this was all about the films of the year and was interesting.
~ Great British Railway Journeys - I watched the first episode of this with mum last night because she loves trains and railways. Disappointingly though, not much of the content was actually about railways.
~ Nurse Jackie - I watched the first episode of this last night to see if it was any good. And I'm not sure. I didn't think it was very funny though. Think I might have to watch tonight's episode too and then see what I think.
~ Wanted Down Under - I don't usually watch daytime TV, but watched one episode of this this week. I've watched it before when it's been on because I quite like the idea of visiting Australia. I used to want to live there, but I don't think I do any more.