A busy week

On Tuesday afternoon me and mum went out to visit my nan. She wasn't in as good spirits as she usually is because she'd not been sleeping well. But when we saw her she'd just got a supply of her usual painkillers and we provided her with earplugs and an eyemask so thought they'd help her sleep better. Dad visited her on Wed and said she was much more like her usual self after a better night's sleep. My nan's wrist is a lot better (she broke it in a fall in November) and she's able to have her wrist splint off for periods now. And she's generally feeling a lot better than when she was admitted 5 weeks ago, which I think is due to the rest she's been getting. The doctors are still trying to get her to put on weight though, so she's allowed to order snacks and high calorie foods with her usual meals. But she's quite a picky eater, so hasn't gained any weight yet. She's 5ft 6" and weighs just 46kg. I ate her slice of cake for her while we were there because she didn't want it. I'm not sure if the scans and tests haven't shown anything or whether they have but my nan just hasn't been told. She's not seen her consultant for about 3 weeks, she keeps seeing junior doctors instead and they don't have a clue! We've all suggested that she asks to see her consultant, but my nan wont because she doesn't want to cause any bother. However she is going to be discharged tomorrow or Tue :D The only thing stopping her getting home was the fact that her bed was too high for her now that her mobility has decreased, but Dad bought and set up a new one for her yesterday.

And on the way home from visiting nan I called in at the village surgery to pick up some tablets for dad and to give mine and mum's prescriptions in. I'll return tomorrow to pick up the tablets and tape for my NG tube that I ordered.

On Tue night I got to sleep at about midnight again :) That was good though as I needed to be at the stupidly early time of 7.30am on Wed morning! However I've been very nocturnal again since then :P Need to try to get to bed at a sensible time tonight though because I need to get up earlier than usual for a physio appt tomorrow.

On Wed morning at 9am I had my first Pathways to Work interview. Most people who receive the ESA benefit have to attend at least 5 of these interviews and the aim of them is to help you get back into work after being ill. I was quite nervous about it as I didn't know what to expect and was worried that I'd be pressured into going back to work before I was well enough. However, it went very well. I saw a lovely advisor and together we filled in lots of forms and I was asked lots of questions about my health, how it would affect me working, what sort of work I'd like to do etc. The advisor I saw agreed that I'm not well enough to work at the moment. However I've got an appt with someone else for 3 weeks time to help me put together a CV and I'll be seeing the same lady again in about a month when we're going to have a think about whether I could try some volunteering. So I'm glad I'm not going to be pressured into anything. And after my appt I had a wander round town and then we went to Starbucks. They charged us £2.20 for a glass of milk for me, what a rip-off!

And it started snowing while I was out on Wed - at last! It snowed solidly from about 9am til about 1pm. And the snow settled too. We've not had any more since then though and I don't think we're forecast any more. The snow doesn't seem to have hit us nearly as badly as it has the rest of the UK. The snow froze, but our roads seemed ok. And the snow is melting now.

On Wed late morning/early afternoon mum had to brave the blizzards to go and rescue Alf from college before he got stranded there. She managed to get him ok, but somehow skidded off the road on the way home and destroyed a fence! Luckily they weren't hurt and the car only has a tiny little scratch on the paintwork! Haha :P

When I got back home on Wed I collected some high calorie drinks from our next door neighbour because they'd been delivered while we were out. The parcel contained some Fortisip drinks - which I already know upset my tummy, some yoghurt style Fortisip drinks - which I still need to try but suspect may also upset my tummy, some Fortijuice drinks - I tried the apple flavoured one yesterday and it made me feel nauseus all day and some strawberry flavoured Fortisip puddings - I've tried 2 of them and they're not pleasant but I can manage them. I'm going to try the Fortisip yoghurt flavours and then get back to my dietician with my thoughts on them all.

I was exhausted after my busy morning on Wed, but still managed to have a quite a productive afternoon and evening. That afternoon I was phoned by a liver nurse from Hosp B. He said he couldn't answer all my questions because my consultant, Dr G, was out of the country. Dr G was supposed to be back, but couldn't get a flight due to the snow. Another consultant I know, Dr B, had been involved in the Wed meeting instead, but she'd been phoned at home because she was snowed in! But some of my questions could be answered. My Tac level was 8.2, so they want to keep my Tac level the same for now. It'll be reviewed after my next blood test at the end of the month. I've still not heard back from the company that deliver my Tac but will have to chase them up tomorrow because I really am running short of Tac (I think I've got 6 days worth left). My next clinic will probably be in March. That's got me wondering what has happened to my clincs with Dr W at Hosp A because when I saw him in July he said he wanted to see me again in 3 months. It's now been 6 months and I've not heard anything, I wonder if they've forgotten me?!

Apparently I will receive the results from my Dec tests in a letter, but I don't know when I'll actually get that. So for now I don't know what my kidney results were. Apparently my scopes and biopsies showed no rejection, which is great :D However they did show some inflammation. The nurse I spoke to didn't have all my notes with him, but thought that that might be an indication of a low level infection that could be causing my tummy cramps. Then I pointed out to him that I'd been getting the pains for 18 months, so he wasn't sure. Hopefully my consultant will soon shed some more light on that though. I'm so glad they've found something that could explain my tummy pains at last. Hopefully now they'll take me more seriously.

The nurse I spoke to had no idea at all about the heart ECG and echo and he looked back at my last admission letter and my last 2 clinic letters but couldn't see any indication of why Dr G had booked them for me. He was very surprised that they'd just been booked without me knowing anything about it. So the nurse emailed Dr G who quickly replied to me. He thought that there had been a mix up. Apparently all post transplant patients have regular echoes, but I'm 3 years post transplant now and hadn't heard about that before! And that can wait til my next clinic, so the separate appt has been cancelled.

On Wed evening I attemped some knitting! Mum taught me with some huge needles and some chunky wool and I knitted a few rows. Me and mum were both surprised at how quickly I got the hang of it despite feeling exhausted. I didn't do much though because I wanted to leave it at a good point. And I've not picked it up again yet.

During my nocturnalism that night I sorted through all the Christmas cards from this year and picked out a few to keep which had notes written inside or were hand made cards. And then I looked through a big carrier bag of my old artwork from when I was about 3 til 12. Some of it was very cute :) And I used to write backwards before I started school, hehe :P

On Thur morning one of the DVDs I'd ordered for my mum for her birthday arrived in the post. And the other DVD has been dispatched. We also received a very sweet thank you note from Sophie's little sister E thanking us for her Christmas presents. That morning I also tidied my bedroom (decluttered, dusted, hoovered...) in preparation for Catherine coming that afternoon. That wasn't a clever idea, I was then shattered before she'd even arrived!

Catherine and her mum came round for a couple of hours on Thur afternoon. It was great to see Catherine because she's been away at uni. We exchanged Christmas presents (Catherine gave me some Pocky and some fluffy bedsocks), chatted, played on our DSes and also played on my Wii which was good fun :D And that evening I prepared for my ESA medical assessment by getting recent medical letters together, reading through the advice I'd received on AYME and some info I found on the Internet...

On Fri morning we headed into the city. As we were in the car we passed by a gritter and so got grit thrown over the windscreen. Of course the water squirters were frozen and using the windscreen wipers just smeared the windscreen even more. So that made mum's driving more difficult. We parked at the Park and Ride carpark and got a bus into the city centre. We were a bit early so wandered around the shops and I picked up a bargain - Coraline on DVD for just £8 (the cheapest current price on the Internet is £13!).

Then we walked to the venue for my ESA medical assessment. The doctor I saw really seemed to know his stuff - he had a good understanding of ME and even understood when I told him I'd had an interssucception of my small intestine! I had to ask him to repeat some things because he had a strong foreign accent, but he understood me, listened well and made lots of notes. I had been told that it could take up to 2 hours, but it only took 30mins. He didn't ask too many questions, but because I answered them in lots of detail we managed to cover a lot. He also asked a lot about my transplant as well as my ME. And he noticed things like that I need to be reminded to eat and drink because I don't feel hunger or thirst. He didn't ask me to do any tasks, it was just talking and answering questions.

The doctor I saw will send his notes to the people who make the decision and then they'll write to me. So I wont know the outcome for some time, anywhere between 2 and 6 weeks I think. The possible outcomes are to be turned down for ESA or to be put into one of 2 groups to receive ESA - the support group which gets a little bit more money and doesn't have to do anything else or the employment group who get slightly less money and have to attend 5 Pathways to Work interviews. So basically most people who receive ESA get put into the employment group with those who are more ill/disabled being put into the support group. The doctor I saw said he shouldn't really be telling me this, but he's going to recommend that I'm put into the support group. The final decision isn't down to him though and I'm not really bothered which group I'm put into, I just want to be granted ESA. So fingers crossed. I'm trying to put it out of my mind for now though.

After my ESA medical assessment me and mum went to a cafe where I had a glass of milk, a croissant and a bit of mum's piece of flapjack. I always wear an organ donation wristband. I was given lots post transplant by someone I saw at the time, but haven't been able to get hold of any more, they were just manufactured as a one off. I gave lots to friends to wear to raise awareness and me and dad have got through a few each because they wear out after a while or get lost. I lost one when I was in Japan, I think it must have flown off one time when I took my gloves off. And somehow I managed to lose my final wristband that way was while we were out on Fri :( Luckily Claire had one that she didn't wear much, so she's given me that back. I felt lost without it.

On Fri evening I was surfing the Internet and discovered that Ellie Goulding (a great singer/songwriter who I saw supporting Little Boots on tour) had been named as BBC's Sound of 2010 :D You can read more about her and the award here and here. And she was on Radio 2 here if you'd like to hear some of her music. And while I was on the Internet I also cancelled my subscription to Focus magazine. It's a great magazine, but I'm really struggling to read it at the moment. And mum's friend Mary (who lives just across the road) popped in to tell us about how her trip to New York had been. It sounded amazing, I'd love to go to New York!

On Saturday and today I've been exhausted after such a busy week and a stressful day on Fri. So I've not managed to do much. On Sat I briefly played on my Wii and chatted to Chris when he popped round. And I also remembered that I'd got 60 free Napster music downloads when I bought my new laptop, so used some of them to download Alexandra Burke's Overcome album (which I've listened to lots on Spotify and really like) and a song called Under The Sheets by Ellie Goulding which I really like and heard her perform live when we saw her :)

This morning I felt shattered so tried to go back to bed for a couple of hours. I'd just nodded off though when I was woken by the sound of the downstairs TV coming up through the floor so I decided to give up on that plan. Claire came round this afternoon which was nice, but we only chatted because I didn't have the energy to play on the Wii or anything like that.

There was outrage in the ME community earlier this week when the Daily Mail posted a poll on its website asking whether people thought ME was a genuine illness or not. You can view it here. It's annoyed me a bit because they wouldn't dare run a poll like that for any other illnesses, but somehow it's ok to do that for ME. Grrr. Some people I know have really been upset by it though :(

I posted an update today about the latest news on Jess. If you haven't already done so, please read it here.

M spent 6 hours in theatre on Thur. She remained stable throughout the operation and afterwards. The surgeons discovered that all of her transplanted bowel is very damaged. They couldn't remove it all because of the blood vessel connections to her transplanted liver (which is completely fine), so just removed the worst bits in the hope that that will reduce the bleeding. If not she'll have to return to theatre this week to have some more removed. The hope now is that she'll stabilise enough to be listed for a second transplant. Fingers crossed.

I've been in contact with C, who is mine and Imogen's mutual friend. Her mum had been receiving text updates from Imy's mum, so she let me know as much as she knew. And C gave me Imy's mum's mobile number so I've been in contact with her myself today. Imy received her trasplant on Dec 31st, so that's 11 days ago. She's back on a ward and has been eating a little. She could eat a bit pre-transplant, but it was very restricted. Imy is still very uncomfortable which is completely understandable and is having a bit of difficulty learning to take her tablets orally because she's always had them down a tube before. But her hospital seem to have a very different approach to Hosp B. After my transplant my TPN (intravenous feeding) was gradually reduced and replaced by NG (enteral) feeding. And then as I've gradually learnt to eat and have built my eating up, my NG feeds have been reduced. However Imy is allowed to eat pretty much whatever she wants and is currently still on TPN. But next week they're planning to stop her TPN completely and see how she goes with just eating. She wont have any enteral feeds. That sounds very daunting to me, but hopefully Imy will manage ok. Her mum thinks that she might be in touch with me herself soon and then hopefully I'll be able to visit her in hospital when she's feeling a bit better :)

This week I've listened to quite a bit of music. When mum played with Spotify we listened to Michael Buble (who mum likes more than me) and Pixie Lott (who we both love). I've also listened to Mika on my iPod on the buses on Fri. And I've listened to The Saturday's new album Wordshaker (which I received for Christmas from one of my Secret Santas) - I currently really like Ego which is going to be their next single. I've just discovered that Spotify have now made Cheryl Cole's album 3 Words and Rihanna's latest album Rated R available to the people who use Spotify for free, whereas it was originally just available to paying members. I've been waiting for both of those albums so have listened to a bit of Cheryl Cole's album but am looking forward to listening to more of it and I'm also looking forward to seeing what I think of Rihannna's album.

This week with my parents I've watched the final 2 episodes plus the outtakes of the first series of Gavin and Stacey and the first 2 episodes of the second series (which we've borrowed from the library). We're still all really enjoying watching it together :) And on my own I've watched 2 episodes of The Vicar of Dibley from my boxset and 3 episodes of the first series of Dragons' Den which I rented from Tesco DVD rental.

And the only film I've watched this week is St Trinians (which I had rented), with my parents. I thought it was quite good. Me and mum are hoping to go to the cinema with Claire on Wed evening to see St Trinians 2 :)

And on TV I've watched the following:
~ Great British Railway Journeys - I started watching this series with mum because she loves trains and railways. I said in my last blog post that the first episode was disappointing because most of the content wasn't actually railway related. We watched Tue's episode and then gave up on it.
~ Hannah: The Girl Who Said No To A New Heart - this was on TV on Tue evening, but I watched it on Wed. It's definitely worth a watch, as it's very thought provoking.
~ Nurse Jackie - this is a black comedy series from the USA. It was on the BBC every night last week and the remaining episodes will be on weekly from tomorrow (Mon). I wasn't sure about it at first, but now me and mum really like it. I'd recommend it.
~ Wife Swap USA - rubbish TV I know, but it amused me ;)
~ 3 Men Go To Ireland - I watched the second episode of this off our HDR and it was very funny.
~ Tracy Beaker Returns - I loved watching the original series of Tracy Beaker when I was younger and a new series has just begun after many years. So I'm watching it :D
~ QI - very funny as always.
~ Sugababes new music video for Wear My Kiss - I used to like the Sugababes, but have gone off them recently. I had to watch the first TV showing of their new video though. I wasn't impressed.
~ and I've also watched the music channels a bit this week too.