My braces have been settling and are now more comfortable and not painful unless I try to eat! My teeth are very sore when I chew, so I'm living on soup, fromage frais and rice pudding at the moment as they don't requite chewing, lol! My friends who've had experience of braces have said they can take up to a week to settle, so I'll see how it goes for the rest of this week. With my limited diet at the moment I was quite worried about weighing myself this morning, but my weight was the same as last week :D I think it must be the rice pudding that's doing the trick!
I received my new phone from my older brother Chris on Saturday evening and I've had fun playing with it this week. I really like the 5 megapixel camera :) I know it's got many more features, but I've not discovered them all yet!
This evening I received a phone call from my GP, Dr I, about my referral to the CFS unit. When I saw him last week he explained that before a referral went through they needed lots of bloods tests doing to rule out any other causes for the CFS symptoms. But we thought that would be fine as Hospital B require me to have regular, thorough, blood tests, the last of which was done at the beginning of March. However, the phone call tonight was because they actually need all the blood tests repeating before I can be referred! The blood tests that Hospital B ask for were 3 weekly, but have just been moved to 3 monthly as my results had been consistently fine for a while. So Dr I said I could either wait for my next routine blood test (2 months away) and then he could write the referral, or I could have a blood test sooner. So I'm going to have a blood test within the next week or so, so the referral can be sent ASAP. Dr I will write the forms out and then I'll take them to Hospital H.
I've been tired this week at school, but I've coped ok so far. I've had quite a lot of catching up to do from the 3 days I missed last week, so I've been quite busy.
I'm really looking forward to the Easter holidays though that begin on Friday. I've got lots of fun things planned already. Next Monday I'm going to London to take part in a photocall for Donor Day and on Tuesday (Donor Day) I'm running a Donor Desk at my local library to encourage more people to join the Organ Donor Register. For more about Donor Day please have a look at Holly's blog. Also sometime in the first week of the Easter holidays I'm planning to meet up with a couple of friends from my old school who I've not seen for ages. And then on the Friday after Good Friday me and my mum are going to Birmingham for the day (not sure yet what we'll do) and then that night we're seeing Pink in concert :D Despite all my exciting plans I need to make sure I leave some time to revise as my exams are now just less than 5 weeks ago and I've barely done any revision!
Tomorrow I finish school just after midday (I love free periods!), so my mum is going to collect me and we're planning to go to the cinema to see The Young Victoria. We really want to see it, and we've planned to before, but we've not got there yet! So hopefully all will go to plan tomorrow and we'll get there :) And then on Friday my friend Claire is coming round, which I'm really looking forward to as I usually see her every week, but haven't seen her for 3 weeks now.
Tuesday, 31 March 2009
Friday, 27 March 2009
Getting used to braces and a disappointment
I've been getting used to my braces today. I've worked out how to use the wax I was given to cover up the sharpest brackets to stop them catching on the inside of my mouth. And I've been taking painkillers today which have helped with my teeth hurting. And I'm getting used to the feel of them in my mouth, so I'm hopeful that they'll feel more comfortable each day. I'm still a bit concerned about my eating though, as I can't chew, but have been eating soups today, so I'm managing to eat something. I'm going to contact the orthodontist on Monday for some advice if I'm still struggling.
I didn't go into school today as I felt exhausted after a couple of busy days and was in a bit of pain with my braces. So I had a lie in this morning and slept for a total of 12 and a half hours! But this afternoon I felt a lot better, so did some Japanese homework.
My older broter Chris got his new phone (an iPhone!) through the post today. He's on a contract so gets a new phone every 18 months, and when he does he gives his old phone to me. So he's working out how to use his new phone tonight and then tomorrow he'll give me his old phone :D And I'm going to pass my current phone on to my Dad.
Although I didn't make it in to school today, my dad dropped my China deposit in today as today was the deadline. I heard from a friend this evening and I didn't get a place on the trip :( It was oversubscribed, so they narrowed the people down by looking at who might do the new Chinese course at school next year, so that's the year 12s. Which I don't think was fair, as they opened the opportunity to everyone and then decided that they'd take year 12s! So I'm quite disappointed as I really wanted to go, but I've still got America in August to look forward to.
I didn't go into school today as I felt exhausted after a couple of busy days and was in a bit of pain with my braces. So I had a lie in this morning and slept for a total of 12 and a half hours! But this afternoon I felt a lot better, so did some Japanese homework.
My older broter Chris got his new phone (an iPhone!) through the post today. He's on a contract so gets a new phone every 18 months, and when he does he gives his old phone to me. So he's working out how to use his new phone tonight and then tomorrow he'll give me his old phone :D And I'm going to pass my current phone on to my Dad.
Although I didn't make it in to school today, my dad dropped my China deposit in today as today was the deadline. I heard from a friend this evening and I didn't get a place on the trip :( It was oversubscribed, so they narrowed the people down by looking at who might do the new Chinese course at school next year, so that's the year 12s. Which I don't think was fair, as they opened the opportunity to everyone and then decided that they'd take year 12s! So I'm quite disappointed as I really wanted to go, but I've still got America in August to look forward to.
Thursday, 26 March 2009
Braces!
This morning I had my braces fitted at the orthodontist. Having them fitted took around an hour and wasn't too bad, apart from that the lady fitting them spoke very little English, so most of the time I had no idea what was happening. And then when I walked out of the room after just over an hour, one of the bits that had been glued to my teeth fell off! So I had to go back in to get it re glued.
I'm very fed up now though as my braces are very uncomfortable. They feel horribly bulky in my mouth and are irritating the inside of my lips. They don't hurt though, so that's good, although I have been warned they may ache tomorrow.
The most frustrating thing is that I can't chew anything! I have an overbite, so I can either bite to make my front teeth meet or bite to make my back teeth meet. So obviously to eat I bite back to make my back teeth meet so I can chew my food. But due to the metal bits I've got on my teeth, I can't bite back any more, as they get in the way. So I can't chew anything! I tried sandwiches, but couldn't eat them, so for tea I've just had noodles. I cooked them in a nice sauce and then cut them up really small. Then I just sucked them! I'm really concerned about losing any more weight, as if I do then I'll probably have to go back onto enteral feeds, and my eating was going relatively well until this. So I don't know what I'm going to do :(
I'm very fed up now though as my braces are very uncomfortable. They feel horribly bulky in my mouth and are irritating the inside of my lips. They don't hurt though, so that's good, although I have been warned they may ache tomorrow.
The most frustrating thing is that I can't chew anything! I have an overbite, so I can either bite to make my front teeth meet or bite to make my back teeth meet. So obviously to eat I bite back to make my back teeth meet so I can chew my food. But due to the metal bits I've got on my teeth, I can't bite back any more, as they get in the way. So I can't chew anything! I tried sandwiches, but couldn't eat them, so for tea I've just had noodles. I cooked them in a nice sauce and then cut them up really small. Then I just sucked them! I'm really concerned about losing any more weight, as if I do then I'll probably have to go back onto enteral feeds, and my eating was going relatively well until this. So I don't know what I'm going to do :(
China? A trip to hospital B and The Apprentice
On Tuesday at school I discovered that will be a school trip to China in July for a fortnight. It sounds like a fantastic opportunity and is good value for money, so I'd like to go. However it looks like it might be oversubscribed as there are only 6 places, so if we're interested we have to get a deposit in by Friday. And if more than 6 people give in deposits, then names will be picked out of a hat. So I'm going to hand in a deposit and then see. I'll tell you more about the trip if I get a place, but am trying not to get my hopes up too much yet, as it's not definite. And of course I'm a bit concerned about my energy levels for such a big trip, but I was ok in Japan, so hopefully I'd be ok if I went to China.
On Wednesday I went to hospital B. In the morning I had a cognitive assessment, which is like an IQ test. I had one before my transplant (so about 2 and a half years ago) and then they like patients to do one post transplant too. The one I did previously went really well, but today's wasn't so good because I was so tired and couldn't think straight. But I spoke to the psychologist about how I've been feeling and how it's suspected I might have CFS and she said she'd contact my school before putting the cognitive report together. She also spoke to me about what might happen if I'm diagnosed with CFS, such as being referred to a psychologist to learn a technique called pacing to help make the most of what limited energy I have. And I'm going to forward her the referral letter my GP sends out plus copies of any letters I receive from the CFS unit. So it sounds like she might be a help :)
After my cognitive assessment I went up to the transplant ward. I saw lots of nurses I knew, including my favourite nurse :D And I spent some time with a little girl (K) and her parents who are currently on the ward. K is 5 years old and had a transplant like mine when she was 11 months old. But she's been having lots of problems recently and has been in hospital since Christmas, so understandably she's very fed up. So I chatted to her mum for a while, who's lovely, and I even saw K smile (which is very rare at the moment) :)
Then I ate lunch and then it was time for my speech! It went really well and I got lots of positive feedback afterwards. It was part of an Intestinal Transplant Study Day for health professionals, so in my speech I told my personal story and showed photos of me at various stages of my life. I really enjoyed planning and then giving the speech, as I enjoy doing things like that, but I have to admit I was a bit nervous when I was actually speaking. Later in the day all of the speakers, including me, sat on a panel so that health professionals in the audience could ask us any questions. And the majority of them were for me!
During my speech I asked the audince to raise their hands if they were on the Organ Donor Register. And only three quarters of the audience put their hands up. So one quarter of the health professionals there, who clearly have an interest in small bowel transplant, aren't on the Organ Donor Register! So I asked them to think about why they hadn't signed up and to consider doing so as they could make such a huge difference to someone's life.
After my speech I spoke to lots of people. I met my old dietician from hospital B, who I'd not seen for around 2 years, so it was lovely to catch up with her. I spoke to one of the physio's from the liver team about my suspected CFS and she said she'd try to find some physio information for me. I saw my dietician and chatted to her and we've made a plan to try to get my weight back up. Rather than going back on the enteral feeds, I'm going to try reintroducing cow's milk to my diet for some extra calories. I used to drink lots of milk, but stopped after I suspected it was causing my stomach aches. However my stomach aches continued even without the milk, so it doesn't look like that was the cause. And if the reintroduction of cow's milk is successful I can then mix it with a special powder for extra calories. UI was going to speak to my dietician about the British Transplant Games as she's the team manager and I have some questions, but we didn't have time, so we'll do that by phone. I wanted to ask my consultant about going to China, but he was very busy, so I'll contact him via email or phone. While speaking to one of the liver nurses, I was very surprised to discover that she's been reading my blog. I don't mind, but I write this with a specific audience in mind (my friends within the transplant community and fellow bloggers) and didn't expect health professionals to be reading it! And I'm not sure who gave them my blog address. But hi Lindsay if you're reading this!
It was also really interesting to meet and talk to Beverly, a lovely lady from Pittsburgh in the US, who runs a small bowel transplant programme over there. In the UK small bowel transplants are still relatively rare and there aren't many of us who've had them. But in the US, they've done loads of small bowel transplants. And the really exciting news is that Beverly runs a summer camp every year in the US for liver and small bowel transplant patients aged between 7 and 17. More information can be found here. And she's asked me if I'd like to help out at the camp in August! I'd only have to pay for my flights. It sounds a great opportunity, so I'm really hoping to go. There are also plans for 3 or 4 more children from hospital B's transplant programme to attend as well as possibly a couple of adults from the liver team. So it all sounds very exciting and I'm waiting to hear more from Beverly.
And last night I made it home in time to watch the new series of The Apprentice :D I've only seen 2 series of The Apprentice so far, but really enjoy it, so I was eagerly anticipating the new series. Last night's episode was good and I think I've already got a favourite - Debra! I wish Mona had gone last night though, I didn't like her at all.
On Wednesday I went to hospital B. In the morning I had a cognitive assessment, which is like an IQ test. I had one before my transplant (so about 2 and a half years ago) and then they like patients to do one post transplant too. The one I did previously went really well, but today's wasn't so good because I was so tired and couldn't think straight. But I spoke to the psychologist about how I've been feeling and how it's suspected I might have CFS and she said she'd contact my school before putting the cognitive report together. She also spoke to me about what might happen if I'm diagnosed with CFS, such as being referred to a psychologist to learn a technique called pacing to help make the most of what limited energy I have. And I'm going to forward her the referral letter my GP sends out plus copies of any letters I receive from the CFS unit. So it sounds like she might be a help :)
After my cognitive assessment I went up to the transplant ward. I saw lots of nurses I knew, including my favourite nurse :D And I spent some time with a little girl (K) and her parents who are currently on the ward. K is 5 years old and had a transplant like mine when she was 11 months old. But she's been having lots of problems recently and has been in hospital since Christmas, so understandably she's very fed up. So I chatted to her mum for a while, who's lovely, and I even saw K smile (which is very rare at the moment) :)
Then I ate lunch and then it was time for my speech! It went really well and I got lots of positive feedback afterwards. It was part of an Intestinal Transplant Study Day for health professionals, so in my speech I told my personal story and showed photos of me at various stages of my life. I really enjoyed planning and then giving the speech, as I enjoy doing things like that, but I have to admit I was a bit nervous when I was actually speaking. Later in the day all of the speakers, including me, sat on a panel so that health professionals in the audience could ask us any questions. And the majority of them were for me!
During my speech I asked the audince to raise their hands if they were on the Organ Donor Register. And only three quarters of the audience put their hands up. So one quarter of the health professionals there, who clearly have an interest in small bowel transplant, aren't on the Organ Donor Register! So I asked them to think about why they hadn't signed up and to consider doing so as they could make such a huge difference to someone's life.
After my speech I spoke to lots of people. I met my old dietician from hospital B, who I'd not seen for around 2 years, so it was lovely to catch up with her. I spoke to one of the physio's from the liver team about my suspected CFS and she said she'd try to find some physio information for me. I saw my dietician and chatted to her and we've made a plan to try to get my weight back up. Rather than going back on the enteral feeds, I'm going to try reintroducing cow's milk to my diet for some extra calories. I used to drink lots of milk, but stopped after I suspected it was causing my stomach aches. However my stomach aches continued even without the milk, so it doesn't look like that was the cause. And if the reintroduction of cow's milk is successful I can then mix it with a special powder for extra calories. UI was going to speak to my dietician about the British Transplant Games as she's the team manager and I have some questions, but we didn't have time, so we'll do that by phone. I wanted to ask my consultant about going to China, but he was very busy, so I'll contact him via email or phone. While speaking to one of the liver nurses, I was very surprised to discover that she's been reading my blog. I don't mind, but I write this with a specific audience in mind (my friends within the transplant community and fellow bloggers) and didn't expect health professionals to be reading it! And I'm not sure who gave them my blog address. But hi Lindsay if you're reading this!
It was also really interesting to meet and talk to Beverly, a lovely lady from Pittsburgh in the US, who runs a small bowel transplant programme over there. In the UK small bowel transplants are still relatively rare and there aren't many of us who've had them. But in the US, they've done loads of small bowel transplants. And the really exciting news is that Beverly runs a summer camp every year in the US for liver and small bowel transplant patients aged between 7 and 17. More information can be found here. And she's asked me if I'd like to help out at the camp in August! I'd only have to pay for my flights. It sounds a great opportunity, so I'm really hoping to go. There are also plans for 3 or 4 more children from hospital B's transplant programme to attend as well as possibly a couple of adults from the liver team. So it all sounds very exciting and I'm waiting to hear more from Beverly.
And last night I made it home in time to watch the new series of The Apprentice :D I've only seen 2 series of The Apprentice so far, but really enjoy it, so I was eagerly anticipating the new series. Last night's episode was good and I think I've already got a favourite - Debra! I wish Mona had gone last night though, I didn't like her at all.
Monday, 23 March 2009
Fatigue - some progress
After another weekend of feeling rubbish I decided to try to do something about my tiredness. I've still not had a response from the email I sent to Dr W from Hospital A, so this evening I had an appointment with my GP, Dr I. He's known me since I was a baby, and is really good, so I hoped he'd have some suggestions. I filled Dr I in on the progression of my fatigue from July til now and told him about how it's affecting me. He asked me some questions and also asked what I know about Chronic Fatigue Syndrome. Then Dr I said some of what I'd described sounded like CFS, but some things didn't quite fit, but he knows how complicated I am! And he also reassured me that it didn't sound like I had depression (which was something I'd been wondering about), but it just sounded like I was fed up and frustrated with feeling so tired.
I was then told that there is a CFS unit just down the road, which Dr I said he could easily refer me to. He'd just need to write them a letter. Although it may not be CFS that I have, they'd still be able to offer me some support. So I said that sounded great and so he's going to refer me. However, they receive a lot of referrals, so it will be a couple of months before I get a referral, which will be after the exams I'm currently quite worried about :( But at least I've made some progress and will get a referral eventually.
And Dr I said that he thought doing some exercise might help me to feel a bit less tired (I currently don't do any), so he suggested I go swimming when I can, as that's the exercise I most enjoy. So I'm going to try that again (possibly next weekend), although last time I went swimming I think it gave me bad stomach ache, so I'm a bit wary.
I was then told that there is a CFS unit just down the road, which Dr I said he could easily refer me to. He'd just need to write them a letter. Although it may not be CFS that I have, they'd still be able to offer me some support. So I said that sounded great and so he's going to refer me. However, they receive a lot of referrals, so it will be a couple of months before I get a referral, which will be after the exams I'm currently quite worried about :( But at least I've made some progress and will get a referral eventually.
And Dr I said that he thought doing some exercise might help me to feel a bit less tired (I currently don't do any), so he suggested I go swimming when I can, as that's the exercise I most enjoy. So I'm going to try that again (possibly next weekend), although last time I went swimming I think it gave me bad stomach ache, so I'm a bit wary.
Friday, 20 March 2009
Tiredness and trying to cope with it
Sorry I've not managed to write a proper update for a week. I'm going to apologise in advance for the length of this post as I imagine it'll be another long one - sorry.
Last Friday I didn't make it to the cinema as the showing we had planned to go to would have finished later than Alf finished school, so we couldn't go as mum couldn't arrange for anyone else to pick him up. Because we didn't go to the cinema we also didn't go into town, as we'd planned to do that on the way. But we still wanted to go out, so instead we went out for lunch to the Bistro where my older brother works. I'd not been since he'd started working there, so it was nice to see what changes they'd made and to see my brother enjoying his job. And the food was yummy too! Then Friday evening my friend Claire came round and we had a great night watching Comic Relief :D I watched it from 7pm til midnight and then recorded the last 3 hours after I went up to bed. The highlights for me were French and Saunders doing Mamma Mia, which I thought was fantastic and really funny, and Comic Relief does The Apprentice. I love The Apprentice and can't wait for the new series to start again next Wednesday.
Writing about TV has just reminded me that I mentioned 'Deborah 13: Servant of God' in my last post. Thanks for your opinions Jessica and Becky. I'll write another post soon with my views, as I don't want to make this post even longer!
Over the weekend I didn't manage to do much because I was really tired. I also felt very fed up as my tiredness is so frustrating and has been going on for 8 months now (since last July) and I still don't have any answers. And I'm struggling to keep up at school and am concerned about my looming exams, as I'm always so tired and am now struggling to concentrate. So I spoke to my parents and we made a bit of a plan. My consultant at hospital A, Dr W, had suggested at my clinic in January that he thought it could be chronic fatigue syndrome (CFS). So I emailed him last weekend and asked if it would be possible to have a referral to a specialist for a diagnosis. If it is CFS, then I might be able to get some support and coping strategies, and if it turns out that it isn't CFS, then I can chase up my consultants to find out what it is. I've not had a response from Dr W yet though.
On Monday I spoke to Mrs K (the deputy head of sixth form), as she's always been a great support to me, and arranged to have a meeting with her on Tuesday lunch time. She's very supportive and helpful, but I got the impression from our meeting that she doesn't really understand how I'm feeling. But we came up with a few ideas. We came up with a schedule for getting on top of my work (preparing for my Japanese oral til Friday, then making a revision timetable and beginning revision at the weekend as the exams are looming - they begin 1st May!) and after Mrs K saw that my timetable for the next day was relatively empty (only 2 lessons), she suggested I have the day off to work on my Japanese oral and hopefully get some energy back for the end of the week. And because I'm struggling to concentrate in lessons, but especially in double lessons (which are 2 hours long), she suggested that I try having a short break every 20mins in double lessons to see if it refreshes my concentration.
I managed to prepare for my Japanese oral successfully this week and had it today. It wasn't a disaster, but could have been better. I'm relieved it's over now though and am just trying to forget about it now as there's nothing more I can do. This week I've got some homework, but am hoping to start revision - as long as I'm not feeling too tired. Having Wednesday off worked well and I had a really good day when I got back to school yesterday, but then didn't feel very good today - probably partly as a result of doing too much yesterday! Despite being exhausted and having stomach ache today I managed the whole day and am now glad it's the weekend. I hope I can get some answers to my tiredness soon as it's really frustrating and I'm concerned about missing so much school. And I've not put the new plan for coping with double lessons into practise yet, but will do on Monday.
This week at school as well as trying to keep up with school work, I've also been doing some bits for the school yearbook. I'm part of the group who've been producing it, there are about 6 of us. The deadline for sending it off to the publishers is this weekend, so this week has been quite hectic! Me and my friend Catherine produced a montage page of the best of the Japan photos to be included in the yearbook. So it was nice to look through all the photos, it brought back lots of memories. I promise some photos will be put up on here soon.
On Wednesday evening I babysat for H, the 10 year old girl I often sit for. It was from 7.30 til about 10.15, so I took one of my Wii games for H to play and then a book to read once she went to bed. But her mum let her stay up til she returned, so the evening wasn't as relaxing as I expected! But I had a nice time watching H on the Wii, as she really liked the game I lent her. And I gave her a couple of gifts I'd got her from Japan - some chopsticks and a fan. I was quite tired by 9/10pm, but H was hyper, I don't know where she got her energy from!
This week my weight was about the same as last week, but it's still a bit under my target weight. So the plan is for me to try some high calorie drinks to get my weight up a bit. My appetite hasn't been very good over the last couple of weeks, but I think it's probably just because I've not been feeling very well in myself. Next Wednesday I'm speaking at the study day at hospital B, so I'll see my dietician there. I'm also going to chat to her about the British Transplant Games as she's my hospital's team leader. I received the information pack and application forms through the post this week and they look very complicated, so I've got a few questions for her about them. I'm really looking forward to speaking at the study day next week, as I love doing things like that. I've almost finished planning my speech and am going to find some photos to go with it this weekend.
This evening I'm just planning to relax as I'm so tired. My friend Claire was going to come round this evening, but she couldn't make it as her dad is ill, so she's going home to see him this weekend. Over the weekend I don't have many plans, but will probably spend some time with my mum and nan on Sunday because it's Mothers' Day. And I've got some school work to do. Tomorrow evening me and my family are planning to go to the theatre, so I'm looking forward to that :)
Last Friday I didn't make it to the cinema as the showing we had planned to go to would have finished later than Alf finished school, so we couldn't go as mum couldn't arrange for anyone else to pick him up. Because we didn't go to the cinema we also didn't go into town, as we'd planned to do that on the way. But we still wanted to go out, so instead we went out for lunch to the Bistro where my older brother works. I'd not been since he'd started working there, so it was nice to see what changes they'd made and to see my brother enjoying his job. And the food was yummy too! Then Friday evening my friend Claire came round and we had a great night watching Comic Relief :D I watched it from 7pm til midnight and then recorded the last 3 hours after I went up to bed. The highlights for me were French and Saunders doing Mamma Mia, which I thought was fantastic and really funny, and Comic Relief does The Apprentice. I love The Apprentice and can't wait for the new series to start again next Wednesday.
Writing about TV has just reminded me that I mentioned 'Deborah 13: Servant of God' in my last post. Thanks for your opinions Jessica and Becky. I'll write another post soon with my views, as I don't want to make this post even longer!
Over the weekend I didn't manage to do much because I was really tired. I also felt very fed up as my tiredness is so frustrating and has been going on for 8 months now (since last July) and I still don't have any answers. And I'm struggling to keep up at school and am concerned about my looming exams, as I'm always so tired and am now struggling to concentrate. So I spoke to my parents and we made a bit of a plan. My consultant at hospital A, Dr W, had suggested at my clinic in January that he thought it could be chronic fatigue syndrome (CFS). So I emailed him last weekend and asked if it would be possible to have a referral to a specialist for a diagnosis. If it is CFS, then I might be able to get some support and coping strategies, and if it turns out that it isn't CFS, then I can chase up my consultants to find out what it is. I've not had a response from Dr W yet though.
On Monday I spoke to Mrs K (the deputy head of sixth form), as she's always been a great support to me, and arranged to have a meeting with her on Tuesday lunch time. She's very supportive and helpful, but I got the impression from our meeting that she doesn't really understand how I'm feeling. But we came up with a few ideas. We came up with a schedule for getting on top of my work (preparing for my Japanese oral til Friday, then making a revision timetable and beginning revision at the weekend as the exams are looming - they begin 1st May!) and after Mrs K saw that my timetable for the next day was relatively empty (only 2 lessons), she suggested I have the day off to work on my Japanese oral and hopefully get some energy back for the end of the week. And because I'm struggling to concentrate in lessons, but especially in double lessons (which are 2 hours long), she suggested that I try having a short break every 20mins in double lessons to see if it refreshes my concentration.
I managed to prepare for my Japanese oral successfully this week and had it today. It wasn't a disaster, but could have been better. I'm relieved it's over now though and am just trying to forget about it now as there's nothing more I can do. This week I've got some homework, but am hoping to start revision - as long as I'm not feeling too tired. Having Wednesday off worked well and I had a really good day when I got back to school yesterday, but then didn't feel very good today - probably partly as a result of doing too much yesterday! Despite being exhausted and having stomach ache today I managed the whole day and am now glad it's the weekend. I hope I can get some answers to my tiredness soon as it's really frustrating and I'm concerned about missing so much school. And I've not put the new plan for coping with double lessons into practise yet, but will do on Monday.
This week at school as well as trying to keep up with school work, I've also been doing some bits for the school yearbook. I'm part of the group who've been producing it, there are about 6 of us. The deadline for sending it off to the publishers is this weekend, so this week has been quite hectic! Me and my friend Catherine produced a montage page of the best of the Japan photos to be included in the yearbook. So it was nice to look through all the photos, it brought back lots of memories. I promise some photos will be put up on here soon.
On Wednesday evening I babysat for H, the 10 year old girl I often sit for. It was from 7.30 til about 10.15, so I took one of my Wii games for H to play and then a book to read once she went to bed. But her mum let her stay up til she returned, so the evening wasn't as relaxing as I expected! But I had a nice time watching H on the Wii, as she really liked the game I lent her. And I gave her a couple of gifts I'd got her from Japan - some chopsticks and a fan. I was quite tired by 9/10pm, but H was hyper, I don't know where she got her energy from!
This week my weight was about the same as last week, but it's still a bit under my target weight. So the plan is for me to try some high calorie drinks to get my weight up a bit. My appetite hasn't been very good over the last couple of weeks, but I think it's probably just because I've not been feeling very well in myself. Next Wednesday I'm speaking at the study day at hospital B, so I'll see my dietician there. I'm also going to chat to her about the British Transplant Games as she's my hospital's team leader. I received the information pack and application forms through the post this week and they look very complicated, so I've got a few questions for her about them. I'm really looking forward to speaking at the study day next week, as I love doing things like that. I've almost finished planning my speech and am going to find some photos to go with it this weekend.
This evening I'm just planning to relax as I'm so tired. My friend Claire was going to come round this evening, but she couldn't make it as her dad is ill, so she's going home to see him this weekend. Over the weekend I don't have many plans, but will probably spend some time with my mum and nan on Sunday because it's Mothers' Day. And I've got some school work to do. Tomorrow evening me and my family are planning to go to the theatre, so I'm looking forward to that :)
Wednesday, 18 March 2009
My transplant story
There is a fantastic charity called Live Life Then Give Life (LLTGL) which does a lot of work to raise awareness of organ donation.
On their website they have life stories of people who've been connected with organ donation in different ways (such as donors, donor families, recipients and people waiting for transplants). I recently wrote my story up for them and this week it went live on the website. You can read it here. Please have a look and if you have time perhaps you could have a read of some of the other life stories on there too. The stories show the need for organ donors and the difference they can make to people's lives. Thanks.
On their website they have life stories of people who've been connected with organ donation in different ways (such as donors, donor families, recipients and people waiting for transplants). I recently wrote my story up for them and this week it went live on the website. You can read it here. Please have a look and if you have time perhaps you could have a read of some of the other life stories on there too. The stories show the need for organ donors and the difference they can make to people's lives. Thanks.
Monday, 16 March 2009
Bethany's transplant journey
Within the transplant community I know of a little girl called Bethany who is just 5 years old and recently had a life saving liver transplant. Bethany's mum has put together a very powerful video montage of Bethany's transplant journey in the hope that it will encourage more people to sign up to the Organ Donor Register.
You can view the video montage here
You can view the video montage here
Thursday, 12 March 2009
Tired
On Tuesday I'd planned to have a very productive day, as I'd got the day off school, but of course things never go to plan. I had a really tired day and ended up doing nothing for most of the day. But never mind, some days are just like that.
Tuesday evening I heard back from my dietician and she said my weight was fine and we can review it again in 2 weeks. She's happy to send me some samples of some high calorie drinks to try as she thinks they might boost my weight a bit. On the email I sent to my dietician on Tuesday morning I also asked her about the British Transplant Games. They run every summer and hospital B always enters a children's team. I wanted to participate last year, but the games were just after my reversal, so I wasnt well enough to go. I wanted to take part this year, but worried that at 18 I might now be too old for the children's team. My dietician is the hospital B team manager, so I asked her if I could participate. The maximum age has been raised to 20 in the children's teams, so I can participate! :D I'm not at all sporty, but I'd like to have a go, and apparently it's quite a social event, so it should be good. Some of my friends from the transplant community are also planning to take part. It's at the end of July, so I need to clear it with my parents (as it's a 4 day event and is in Coventry) and then I'll have to fill out all the entry forms. I'll keep you updated.
Wednesday I just had double biology, so went into school at break and mum collected me at lunch time. However in the morning before we set off I had a nosebleed. It gave me a shock because I had some awful experiences with nosebleeds when I had liver failure, I used to get frequent nosebleeds that just wouldn't stop, it was quite scary. Anyway since my transplant I've only had a couple of nosebleeds and they'reusually very small and stop quickly. But on Wednesday it took a while to stop, so I was a bit nervous, but it did stop and I managed to get to school. Then yesterday afternoon I just relaxed for most of the afternoon because I was so tired, again.
Yesterday I heard from hospital B, saying they'd received my latest blood results from hospital H and they were all fine. They also chased up my Tac bloods, which we do at home, but I explained that it was a bit late as I'd run out of the kits, so had had to wait for some more to arrive in the post. But I'd taken the blood on Tuesday evening, so it was on it's way.
On Wednesday evening I watched a really interesting BBC documentary called Deborah 13: Servant of God. I'm an aethiest, so I wasn't expecting to agree with the views in the programme, but was really shocked and a quite saddened by the extreme views and sheltered lifestyle of Deborah, who is just 13 years old. I was left thinking about the programme for a long time after I finished watching it and would be interesting to know what you thought if you saw it. If you're interested to watch it it's available on BBC iPlayer here.
Today I was planning to go to school til lunch, but woke up this morning feeling ill. My glands were swollen, I had a sore throat and a bit of a temperature (nothing to worry about, but a little higher than normal) and I was exhausted so I stayed at home. I went back to bed this morning for a few hours and woke up feeling a bit better. I'm trying to be productive today, and so far have been sorting out my ringbinders full of school work and putting dividers in. This should make it easier when I come to start revision. I've also started thinking about the talk I'm giving in 2 weeks to health professionals about my experience of small bowel transplant. I've been through my files on the computer and found the various articles I've written in the past and the plans for previous talks I've given, so they'll help me come up with some ideas. I'm looking forward to this talk, as I really enjoy things like this, but I'm a bit nervous because my talk is expected to be up to 20 mins long (including questions)!
Tomorrow I've not got school as it's a training day, so am planning to go into town (as I want to buy a magazine and some writing pads for school) and then me and mum are going to see 'The Young Victoria' at the cinema. In the evening my friend Claire is coming round to see the remainder of my Japan photos and we're going to watch Comic Relief together. Quite a busy day, so I'm hoping I'll feel ok and not too tired.
Tuesday evening I heard back from my dietician and she said my weight was fine and we can review it again in 2 weeks. She's happy to send me some samples of some high calorie drinks to try as she thinks they might boost my weight a bit. On the email I sent to my dietician on Tuesday morning I also asked her about the British Transplant Games. They run every summer and hospital B always enters a children's team. I wanted to participate last year, but the games were just after my reversal, so I wasnt well enough to go. I wanted to take part this year, but worried that at 18 I might now be too old for the children's team. My dietician is the hospital B team manager, so I asked her if I could participate. The maximum age has been raised to 20 in the children's teams, so I can participate! :D I'm not at all sporty, but I'd like to have a go, and apparently it's quite a social event, so it should be good. Some of my friends from the transplant community are also planning to take part. It's at the end of July, so I need to clear it with my parents (as it's a 4 day event and is in Coventry) and then I'll have to fill out all the entry forms. I'll keep you updated.
Wednesday I just had double biology, so went into school at break and mum collected me at lunch time. However in the morning before we set off I had a nosebleed. It gave me a shock because I had some awful experiences with nosebleeds when I had liver failure, I used to get frequent nosebleeds that just wouldn't stop, it was quite scary. Anyway since my transplant I've only had a couple of nosebleeds and they'reusually very small and stop quickly. But on Wednesday it took a while to stop, so I was a bit nervous, but it did stop and I managed to get to school. Then yesterday afternoon I just relaxed for most of the afternoon because I was so tired, again.
Yesterday I heard from hospital B, saying they'd received my latest blood results from hospital H and they were all fine. They also chased up my Tac bloods, which we do at home, but I explained that it was a bit late as I'd run out of the kits, so had had to wait for some more to arrive in the post. But I'd taken the blood on Tuesday evening, so it was on it's way.
On Wednesday evening I watched a really interesting BBC documentary called Deborah 13: Servant of God. I'm an aethiest, so I wasn't expecting to agree with the views in the programme, but was really shocked and a quite saddened by the extreme views and sheltered lifestyle of Deborah, who is just 13 years old. I was left thinking about the programme for a long time after I finished watching it and would be interesting to know what you thought if you saw it. If you're interested to watch it it's available on BBC iPlayer here.
Today I was planning to go to school til lunch, but woke up this morning feeling ill. My glands were swollen, I had a sore throat and a bit of a temperature (nothing to worry about, but a little higher than normal) and I was exhausted so I stayed at home. I went back to bed this morning for a few hours and woke up feeling a bit better. I'm trying to be productive today, and so far have been sorting out my ringbinders full of school work and putting dividers in. This should make it easier when I come to start revision. I've also started thinking about the talk I'm giving in 2 weeks to health professionals about my experience of small bowel transplant. I've been through my files on the computer and found the various articles I've written in the past and the plans for previous talks I've given, so they'll help me come up with some ideas. I'm looking forward to this talk, as I really enjoy things like this, but I'm a bit nervous because my talk is expected to be up to 20 mins long (including questions)!
Tomorrow I've not got school as it's a training day, so am planning to go into town (as I want to buy a magazine and some writing pads for school) and then me and mum are going to see 'The Young Victoria' at the cinema. In the evening my friend Claire is coming round to see the remainder of my Japan photos and we're going to watch Comic Relief together. Quite a busy day, so I'm hoping I'll feel ok and not too tired.
Tuesday, 10 March 2009
Japanese and family
On Friday I went back to school as I felt a lot better after resting on Thursday. School was unevenful, but we had to postpone our final Japanese group oral to Monday as we'd not been able to prepare as a group due to various reasons, including me being off school the day before. And after school we stayed late to finish writing our script together for the oral, so we could take it away and learn it over the weekend.
Friday evening my friend Claire came round which was great, as I'd not seen her since Japan. I had so much to tell her and I showed her lots of my photos. We didn't get through all 700 though, but she's coming round again this Friday to see the rest. I've not managed to sort through my Japan photos yet, but I will do as soon as I get chance so that you can see some. I also showed Claire the Japanese Harry Potter book I'd bought in Japan, which she loved as she's the biggest Harry Potter fan I know. We had lots of fun looking through and trying to find the character names, shop names (from Diagon Alley) and Hogwarts house names.
On Friday evening, at around 7.30pm, my younger brother Alfie (who is just 16) went into town. 2 hours later my dad received a phone call from the police saying that Alf had had too much to drink and was lying on the pavement. They'd tried to wake him, but couldn't, so had called an ambulance! My dad drove straight there and managed to get Alf into the car to bring him home, so the ambulance wasn't needed. We found out he'd drunk half a litre of vodka in just 45mins! So with the help of my older brother Chris, Dad carried Alf upstairs and put him to bed. For the next 16 hours Alf slept and was sick. But then Saturday afternoon he felt fine and ate an Indian meal with the rest of us, he didn't even have a headache! However, I think he might avoid alcohol for a while!
Saturday was my mum's birthday and my older brother Chris moved out. Mum had a lovely birthday :) I bought her a knitting book, a tapestry from Japan and I gave her an IOU for a trip to the cinema. We're going to go to the cinema to see 'The Young Victoria' on Friday. Chris moving out was pretty uneventful. However he'd asked Alf to help him with moving some sofas, but on Saturday morning Alf was still quite ill (from the vodka). Chris managed to get one of Alf's friends to help him instead though.
On Sunday morning Dad went away fishing. He'll be away til Thursday. I didn't do much on Sunday, just relaxed and did some preparation for my final Japanese group oral on Monday. I also bought some 2 tickets off the Internet for me and mum to see Pink in concert next month! We're very excited as both of us are big Pink fans :D
On Sunday I also spent some time remembering a little girl called Alicia who I met while I was in hospital. She had her first small bowel transplant when she was 2, but then had to have a second one when she was 8 as her first transplant failed. Unfortunately Alicia's second transplant wasn't successful and she died on 29th October 2007, aged just 9 years old. On Sunday it would have been Alicia's 11th birthday. Alicia was such an inspiration as despite all she went through she was always smiling and had a brilliant sense of humour. Xxx
On Monday school was quite stressful. I did my final Japanese group oral as planned, and it went ok, though not brilliantly. Then I discovered that I was due to do a practise individual oral later in the double lesson. I'd thought it would be later in the week, so hadn't done any preparation yet, so it was a bit of a disaster! But at least I had a go, and now I know what I need to work on for the actual individual oral (on Friday 20th!).
Then yesterday mum picked me up from school at lunchtime as I had a free period last. We went to Tesco's to pass some time before picking Alf up from school at 3.30pm. In Tesco's I bought Taylor Swift's second album, 'Fearless', as it was just released in the UK yesterday :D I managed to get my laptop working enough to put the CD onto my iPod and listened to it last night. I've only listened to it through once so far. I expected it to be quite pop-py, whereas it's actually more country, but I like it :) I think some of the songs will become more catchy after I've listened to it a few more times. And I'm still waiting for her Taylor Swift's first album, 'Taylor Swift', to be delivered.
While in Tesco's yesterday afternoon we bumped into Sophie (Chris's girlfriend), as their new flat is just down the road from Tesco's. Sophie invited us back for a cup of tea, so we went to see their new flat. It's currently very cluttered with binbags all over the floor, but it's a lot more spacious than I expected and looks to have a lot of potential. And both Chris and Sophie are very happy with it :)
Tuesdays are the day I weigh myself and email my dietician. I was quite nervous about doing it this morning as my appetite hasn't been too good over the last week as I've had a sore throat and have just had a few rough days. And when I don't feel too well I tend to lose my appetite. I've lost just over half a kilogram in a week, so I've emailed my dietician to let her know. I'm hoping she'll say just see how it goes, but I'm not sure.
Today I've got the day off school :D Usually I'd only have 2 lessons today, but biology was cancelled because our teacher is away at the moment and I persuaded my Japanese teacher to let me off the lesson, as I knew I wouldn't miss much (just a vocab test, which I've resceduled to one lunchtime), as today's lesson was going to be more of my class doing their practise individual orals, but I did mine yesterday. I planned today to be very productive, but I've not done much so far as I'm feeling really tired today :( So I've just been relaxing.
I've discovered that Donor Day (Tuesday 7th April) is during the Easter holidays, so the current plan is that I'll go to the library with my mum that day and run a Donor Desk there :)
Sorry for the length of this blog post. I really ought to update it more often and then I wouldn't need to write so much each time, lol.
Friday evening my friend Claire came round which was great, as I'd not seen her since Japan. I had so much to tell her and I showed her lots of my photos. We didn't get through all 700 though, but she's coming round again this Friday to see the rest. I've not managed to sort through my Japan photos yet, but I will do as soon as I get chance so that you can see some. I also showed Claire the Japanese Harry Potter book I'd bought in Japan, which she loved as she's the biggest Harry Potter fan I know. We had lots of fun looking through and trying to find the character names, shop names (from Diagon Alley) and Hogwarts house names.
On Friday evening, at around 7.30pm, my younger brother Alfie (who is just 16) went into town. 2 hours later my dad received a phone call from the police saying that Alf had had too much to drink and was lying on the pavement. They'd tried to wake him, but couldn't, so had called an ambulance! My dad drove straight there and managed to get Alf into the car to bring him home, so the ambulance wasn't needed. We found out he'd drunk half a litre of vodka in just 45mins! So with the help of my older brother Chris, Dad carried Alf upstairs and put him to bed. For the next 16 hours Alf slept and was sick. But then Saturday afternoon he felt fine and ate an Indian meal with the rest of us, he didn't even have a headache! However, I think he might avoid alcohol for a while!
Saturday was my mum's birthday and my older brother Chris moved out. Mum had a lovely birthday :) I bought her a knitting book, a tapestry from Japan and I gave her an IOU for a trip to the cinema. We're going to go to the cinema to see 'The Young Victoria' on Friday. Chris moving out was pretty uneventful. However he'd asked Alf to help him with moving some sofas, but on Saturday morning Alf was still quite ill (from the vodka). Chris managed to get one of Alf's friends to help him instead though.
On Sunday morning Dad went away fishing. He'll be away til Thursday. I didn't do much on Sunday, just relaxed and did some preparation for my final Japanese group oral on Monday. I also bought some 2 tickets off the Internet for me and mum to see Pink in concert next month! We're very excited as both of us are big Pink fans :D
On Sunday I also spent some time remembering a little girl called Alicia who I met while I was in hospital. She had her first small bowel transplant when she was 2, but then had to have a second one when she was 8 as her first transplant failed. Unfortunately Alicia's second transplant wasn't successful and she died on 29th October 2007, aged just 9 years old. On Sunday it would have been Alicia's 11th birthday. Alicia was such an inspiration as despite all she went through she was always smiling and had a brilliant sense of humour. Xxx
On Monday school was quite stressful. I did my final Japanese group oral as planned, and it went ok, though not brilliantly. Then I discovered that I was due to do a practise individual oral later in the double lesson. I'd thought it would be later in the week, so hadn't done any preparation yet, so it was a bit of a disaster! But at least I had a go, and now I know what I need to work on for the actual individual oral (on Friday 20th!).
Then yesterday mum picked me up from school at lunchtime as I had a free period last. We went to Tesco's to pass some time before picking Alf up from school at 3.30pm. In Tesco's I bought Taylor Swift's second album, 'Fearless', as it was just released in the UK yesterday :D I managed to get my laptop working enough to put the CD onto my iPod and listened to it last night. I've only listened to it through once so far. I expected it to be quite pop-py, whereas it's actually more country, but I like it :) I think some of the songs will become more catchy after I've listened to it a few more times. And I'm still waiting for her Taylor Swift's first album, 'Taylor Swift', to be delivered.
While in Tesco's yesterday afternoon we bumped into Sophie (Chris's girlfriend), as their new flat is just down the road from Tesco's. Sophie invited us back for a cup of tea, so we went to see their new flat. It's currently very cluttered with binbags all over the floor, but it's a lot more spacious than I expected and looks to have a lot of potential. And both Chris and Sophie are very happy with it :)
Tuesdays are the day I weigh myself and email my dietician. I was quite nervous about doing it this morning as my appetite hasn't been too good over the last week as I've had a sore throat and have just had a few rough days. And when I don't feel too well I tend to lose my appetite. I've lost just over half a kilogram in a week, so I've emailed my dietician to let her know. I'm hoping she'll say just see how it goes, but I'm not sure.
Today I've got the day off school :D Usually I'd only have 2 lessons today, but biology was cancelled because our teacher is away at the moment and I persuaded my Japanese teacher to let me off the lesson, as I knew I wouldn't miss much (just a vocab test, which I've resceduled to one lunchtime), as today's lesson was going to be more of my class doing their practise individual orals, but I did mine yesterday. I planned today to be very productive, but I've not done much so far as I'm feeling really tired today :( So I've just been relaxing.
I've discovered that Donor Day (Tuesday 7th April) is during the Easter holidays, so the current plan is that I'll go to the library with my mum that day and run a Donor Desk there :)
Sorry for the length of this blog post. I really ought to update it more often and then I wouldn't need to write so much each time, lol.
Thursday, 5 March 2009
Shopping, tiredness and donor day
Yesterday I only had first 2 lessons at school, so at break time I got the bus into town where I met up with my mum. We had fun shopping and didn't spend too much money :) For a while I've been looking out for a belt that will keep my jeans up, so I was very happy to find 2 very cheap in town.
Then after shopping I went to hospital H for a routine blood test. It went really smoothly and the phlebotomist got the blood first try :) The results will be faxed from hospital H to hospital B. And if the results are all fine then my bloods tests will only need to be 3 monthly :D
I don't know if you'll have heard of a singer/songwriter called Taylor Swift. 'Love Story' is a great song with a lovely video, and it's currently number 2 in the UK charts. You can see it here. I really like 'Love Story' so I decided I wanted to buy Taylor Swift's first album. After not being able to find it in the shops I spent some time tracking it down on the Internet last night, as it seems to have only been released in the US. Her second album will be released here in the UK next week though. But I sourced a copy through the fantastic Amazon and it should be dispatched today or tomorrow :) So I'm really looking forward to getting hold of that album, but I really hope my laptop will co-operate enough to let me put it onto my iPod.
I coped well in Japan and didn't get too tired, and since I've been back my tiredness seemed to be a lot better. But this morning when my alarm went off I woke up feeling exhausted, so I didn't make it into school today. I went back to bed for a few hours and have spent the rest of the day just relaxing - watching TV and reading. I finished my book 'Lottery' on Tuesday evening, so started reading 'Thanks for the Memories' by Cecelia Ahern last night. I don't often give up on books, but I got quite frustrated with 'Thanks for the Memories', and more specifically the unrealistic plot and coincidences, so I've decided not to read any more of it. Later today I'll be going back to 'Middlesex' and I'll let you know what I think of that. Even though I've spent most of today doing nothing I still feel really tired. So I'm going to see how I feel tomorrow morning before I decide whether to go to school or not.
Holly, a fellow transplant recipient, is currently running a brilliant campaign to raise awareness of organ donation. Her latest advance in the campaign is the organisation of Donor Day. More information can be found on Holly's blog or Facebook. Please get involved if you can as it's a great chance to raise awareness and encourage more people to sign up to the organ donor register. I'm not sure if I'm brave enough to run a Donor Desk at school, but my mum will put up a donor desk or some kind of display at our local library where she works.
Then after shopping I went to hospital H for a routine blood test. It went really smoothly and the phlebotomist got the blood first try :) The results will be faxed from hospital H to hospital B. And if the results are all fine then my bloods tests will only need to be 3 monthly :D
I don't know if you'll have heard of a singer/songwriter called Taylor Swift. 'Love Story' is a great song with a lovely video, and it's currently number 2 in the UK charts. You can see it here. I really like 'Love Story' so I decided I wanted to buy Taylor Swift's first album. After not being able to find it in the shops I spent some time tracking it down on the Internet last night, as it seems to have only been released in the US. Her second album will be released here in the UK next week though. But I sourced a copy through the fantastic Amazon and it should be dispatched today or tomorrow :) So I'm really looking forward to getting hold of that album, but I really hope my laptop will co-operate enough to let me put it onto my iPod.
I coped well in Japan and didn't get too tired, and since I've been back my tiredness seemed to be a lot better. But this morning when my alarm went off I woke up feeling exhausted, so I didn't make it into school today. I went back to bed for a few hours and have spent the rest of the day just relaxing - watching TV and reading. I finished my book 'Lottery' on Tuesday evening, so started reading 'Thanks for the Memories' by Cecelia Ahern last night. I don't often give up on books, but I got quite frustrated with 'Thanks for the Memories', and more specifically the unrealistic plot and coincidences, so I've decided not to read any more of it. Later today I'll be going back to 'Middlesex' and I'll let you know what I think of that. Even though I've spent most of today doing nothing I still feel really tired. So I'm going to see how I feel tomorrow morning before I decide whether to go to school or not.
Holly, a fellow transplant recipient, is currently running a brilliant campaign to raise awareness of organ donation. Her latest advance in the campaign is the organisation of Donor Day. More information can be found on Holly's blog or Facebook. Please get involved if you can as it's a great chance to raise awareness and encourage more people to sign up to the organ donor register. I'm not sure if I'm brave enough to run a Donor Desk at school, but my mum will put up a donor desk or some kind of display at our local library where she works.
Wednesday, 4 March 2009
Codie
Codie was an incredible little girl I met while I was in hospital following my transplant. Today should be Codie's 4th birthday, but she died in June 2007. This post is in her memory.
Codie was born healthy and was well until about the age of one, when she developed liver failure. She received a liver transplant, but her body rejected it, so she had a second liver transplant. But her second transplant failed too, so she was relisted and shortly received her third liver transplant. Unfortunately a little while after her third liver transplant her body had been through enough and she died on 6th May 2007, aged just 26 months.
Codie was always cheerful and smiling despite living in hospital for most of her life. I first met Codie in hospital B shortly after my transplant. She'd received her second or third liver transplant within just a few days of mine. So while I was recovering and trying to get back on my feet I'd always aim to walk down to the bay at the end of the ward to see Codie. Spending time with Codie always cheered me up as she was constantly happy. She was such an inspiration too as she went through such a lot, but always had a smile on her face.
Codie was Scottish and instead of saying 'yes' she would say 'aye'. It was very cute. While I was in hospital Codie was learning to talk and usually said very little. However, I remember popping on to the ward one day after an outpatient clinic to see Codie. She had learnt my name and called out 'Molly' when she saw me :)
I will always remember Codie's love of stickers. While I was in the hospital whenever we went out we'd look out for sheets of stickers for Codie. And when I returned home we'd send her stickers in the post. She just loved stickers and stuck them all over her cot. I remember when Codie had been lent a very special electric cot from another department in the hospital. It had to be kept clean and in perfect condition as it was just on loan, but Codie immediately set about covering it in stickers. Her mum had to try to remove them all without leaving any marks on the cot! It was a long job.
Me and my mum also became very close to Codie's mum and I still keep in touch with her now.
I didn't get to Scotland for Codie's funeral, which will always be a regret of mine. I should have tried harder to get there. However I hope that at somepoint in the future I'll be able to travel to Scotland and visit Codie's grave.
Codie will always be an inspiration to me - her constant smile and cheerfulness throughout her illness was incredible. Always remembered and never forgotten xxxxxxxxxx
Codie was born healthy and was well until about the age of one, when she developed liver failure. She received a liver transplant, but her body rejected it, so she had a second liver transplant. But her second transplant failed too, so she was relisted and shortly received her third liver transplant. Unfortunately a little while after her third liver transplant her body had been through enough and she died on 6th May 2007, aged just 26 months.
Codie was always cheerful and smiling despite living in hospital for most of her life. I first met Codie in hospital B shortly after my transplant. She'd received her second or third liver transplant within just a few days of mine. So while I was recovering and trying to get back on my feet I'd always aim to walk down to the bay at the end of the ward to see Codie. Spending time with Codie always cheered me up as she was constantly happy. She was such an inspiration too as she went through such a lot, but always had a smile on her face.
Codie was Scottish and instead of saying 'yes' she would say 'aye'. It was very cute. While I was in hospital Codie was learning to talk and usually said very little. However, I remember popping on to the ward one day after an outpatient clinic to see Codie. She had learnt my name and called out 'Molly' when she saw me :)
I will always remember Codie's love of stickers. While I was in the hospital whenever we went out we'd look out for sheets of stickers for Codie. And when I returned home we'd send her stickers in the post. She just loved stickers and stuck them all over her cot. I remember when Codie had been lent a very special electric cot from another department in the hospital. It had to be kept clean and in perfect condition as it was just on loan, but Codie immediately set about covering it in stickers. Her mum had to try to remove them all without leaving any marks on the cot! It was a long job.
Me and my mum also became very close to Codie's mum and I still keep in touch with her now.
I didn't get to Scotland for Codie's funeral, which will always be a regret of mine. I should have tried harder to get there. However I hope that at somepoint in the future I'll be able to travel to Scotland and visit Codie's grave.
Codie will always be an inspiration to me - her constant smile and cheerfulness throughout her illness was incredible. Always remembered and never forgotten xxxxxxxxxx
Tuesday, 3 March 2009
Seeing nan, swimming and school
I had a great relaxing weekend. On Saturday my nan came round for the day which was lovely as I get on really well with her. My Japan photos are now on my external hard drive, so I started to show my nan them. We didn't finish though as she asked questions about every photo and I'd taken around 700! So my nan is going to come round again soon to see the remained of the photos! I'm planning to post some of the best photos up on here soon (I promise), but it probably won't be til the weekend as I need to go through them all to select just a few to post up.
On Sunday morning I went swimming with my dad. It was so much easier without having to manage a central line or a stoma :) However I had stomach ache for the rest of the day, which may be related to swimming or may be completely unrelated, so I'm a bit nervous about swimming again. However I'd like to go next weekend to see how it goes. While I was swimming I also had fun attempting to teach my dad to swim properly (he can swim, but not very effectively). I discovered I'm not a very good swimming teacher as although I can swim, I wasn't really sure what my arms and legs were doing!
Monday was back to school. I was very tired all day; I don't think weekends are long enough to recover after a full week at school! I had a Japanese group oral exam at 9.30am, which went ok, but it wasn't brilliant. I've got my final Japanese group oral on Friday, so my group are working on that at the moment. Then my Japanese individual oral will be in about a fortnight, scary!
Then I had an appointment with the hygeinist at the orthodontist in preparation for getting my braces fitted at the end of the month. The hygeinst put blue dye on my teeth (which also made my lips go bright blue!) to see how clean they were. Apparently they like them to be cleaner than mine were when you have braces fitted, so she cleaned my teeth up for me and taught me a better brushing technique. I was also given a special toothbrush with bristles of varying length to use when I have braces.
I went back to school for a couple of lessons, but because I was so tired I almost fell asleep at lunchtime! I did manage to survive til the end of the day though (despite being later than usual due to an after school lesson).
Yesterday evening I packed up a shoebox full of gifts to send to a little girl I know who is in hospital at the moment and very fed up. She's been in since just before Christmas and has just spent her 5th birthday in hospital. She's usually very active, but is confined to her bed at the moment, so is very bored and frustrated. So I packed a shoebox with lots of little bits to amuse her including colouring sheets and pencils, stickers, a book, a cuddly toy... That was posted this morning, so hopefully she'll get it soon.
Tuesdays are the day I weigh myself and email my dietician. So this morning I was quite nervous before I weighed myself as I've had another week without any artificial feeds, but knew I couldn't really afford to lose much more weight. But I gained weight :D 0.8kg in one week with just 'normal' eating! Fantastic. It means it's now very unlikely that I'll need to go back onto overnight enteral feeds, as my weight is now heading towards target without any artificial feeds.
Today at school I had another busy day. I only had 3 lessons, but worked through my 2 free periods and most of lunch too. But I finally feel like I'm on top of my homework. This evening I'm just relaxing, sorting out some emails and watching TV. I'm also planning to finish a really good novel I'm reading this evening. It's called Lottery and is by Patricia Wood. I'd highly recommend it as all of my family have recently read and enjoyed it. And it's Alfie's (my younger brother) 16th birthday today. I can't believe he's 16! He had a very yummy birthday tea this evening - Chinese Crispy Duck - my favourite :)
Towards the end of the month, the hospital I had my transplant at (Hospital B) are holding a study day for professionals all about small bowel transplants. I've been asked to give a 10 - 20 min talk and answer questions as a patient representative. I'm really looking forward to it as I enjoy speaking for things like this, and have done many similar talks before. But I've not even started planning it yet, and it's about 3 weeks away. I'll keep you updated on my progress and preparation.
Tomorrow should be the birthday of a very special little girl I met when I was in hospital after my transplant. But sadly she died almost 2 years ago. I'll be making a post in her memory tomorrow, so have a look.
On Sunday morning I went swimming with my dad. It was so much easier without having to manage a central line or a stoma :) However I had stomach ache for the rest of the day, which may be related to swimming or may be completely unrelated, so I'm a bit nervous about swimming again. However I'd like to go next weekend to see how it goes. While I was swimming I also had fun attempting to teach my dad to swim properly (he can swim, but not very effectively). I discovered I'm not a very good swimming teacher as although I can swim, I wasn't really sure what my arms and legs were doing!
Monday was back to school. I was very tired all day; I don't think weekends are long enough to recover after a full week at school! I had a Japanese group oral exam at 9.30am, which went ok, but it wasn't brilliant. I've got my final Japanese group oral on Friday, so my group are working on that at the moment. Then my Japanese individual oral will be in about a fortnight, scary!
Then I had an appointment with the hygeinist at the orthodontist in preparation for getting my braces fitted at the end of the month. The hygeinst put blue dye on my teeth (which also made my lips go bright blue!) to see how clean they were. Apparently they like them to be cleaner than mine were when you have braces fitted, so she cleaned my teeth up for me and taught me a better brushing technique. I was also given a special toothbrush with bristles of varying length to use when I have braces.
I went back to school for a couple of lessons, but because I was so tired I almost fell asleep at lunchtime! I did manage to survive til the end of the day though (despite being later than usual due to an after school lesson).
Yesterday evening I packed up a shoebox full of gifts to send to a little girl I know who is in hospital at the moment and very fed up. She's been in since just before Christmas and has just spent her 5th birthday in hospital. She's usually very active, but is confined to her bed at the moment, so is very bored and frustrated. So I packed a shoebox with lots of little bits to amuse her including colouring sheets and pencils, stickers, a book, a cuddly toy... That was posted this morning, so hopefully she'll get it soon.
Tuesdays are the day I weigh myself and email my dietician. So this morning I was quite nervous before I weighed myself as I've had another week without any artificial feeds, but knew I couldn't really afford to lose much more weight. But I gained weight :D 0.8kg in one week with just 'normal' eating! Fantastic. It means it's now very unlikely that I'll need to go back onto overnight enteral feeds, as my weight is now heading towards target without any artificial feeds.
Today at school I had another busy day. I only had 3 lessons, but worked through my 2 free periods and most of lunch too. But I finally feel like I'm on top of my homework. This evening I'm just relaxing, sorting out some emails and watching TV. I'm also planning to finish a really good novel I'm reading this evening. It's called Lottery and is by Patricia Wood. I'd highly recommend it as all of my family have recently read and enjoyed it. And it's Alfie's (my younger brother) 16th birthday today. I can't believe he's 16! He had a very yummy birthday tea this evening - Chinese Crispy Duck - my favourite :)
Towards the end of the month, the hospital I had my transplant at (Hospital B) are holding a study day for professionals all about small bowel transplants. I've been asked to give a 10 - 20 min talk and answer questions as a patient representative. I'm really looking forward to it as I enjoy speaking for things like this, and have done many similar talks before. But I've not even started planning it yet, and it's about 3 weeks away. I'll keep you updated on my progress and preparation.
Tomorrow should be the birthday of a very special little girl I met when I was in hospital after my transplant. But sadly she died almost 2 years ago. I'll be making a post in her memory tomorrow, so have a look.
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