On Wednesday evening I felt a bit better after resting all day, and planned to just relax that evening so I'd be ok for school tomorrow. At 6pm I'd just started eating tea with my family when my dad asked if I was babysitting that evening. I checked the diary and realised I was due to be babysitting in 30 minutes. So I ate my tea quickly, had a shower and just made it for 6.30pm, though my hair was dripping wet because I'd not had time to dry it! The girl I sit for (H) is 10 (so I guess I shouldn't really call it babysitting) and her mum goes running regularly, so I sit for her about once a week for an hour to an hour and a half. H is no trouble at all and we usually watch the Simpsons and play Uno. However she'd got a Wii for Christmas, so we played on that on Wednesday evening. She had a Wii game that I'd never played before with lots of mini games, so she beat me at that. Then H said that next she was going to thrash me at Mario Kart Wii. Mario Kart Wii is my best Wii game, and I've played on it regularly since I got it on launch day last April, so I thought this was quite unlikely. But H was convinced she'd beat me at Mario Kart. She didn't, lol.
Thursday I went back to school and all was quite uneventful. I had a busy day though (with only 1 free which I worked in) and then had to wait for my dad to collect me late after school (and I spent that time doing homework). On Friday I was exhausted again and nearly didn't go into school. But because I'd already missed Wednesday I decided to go in, but was so tired I couldn't concentrate on any lessons. I met with the deputy head of sixth form (Mrs K), who knows about my medical history, to update her on how I was. I told her how I was struggling with school and exhaustion, so she had a look at my timetable and together we worked out one day that I can miss next week (where I only have one lesson) and one day the week after (a conference day, that I don't need to attend). So I'm relieved about that, as I want to try to conserve my energy a bit over the next couple of weeks, so I can make the most of Japan.
On Friday after school I went to hospital H for a blood test. I had bloods done 3 weeks ago, but not all the neccessary bloods were done (I think the blood forms must have been wrong), so my consultant at hospital B wanted them redone so they could have a full set of bloods before I go to Japan. A vein was found easily, but it was in my elbow and I find they hurt quite a bit there. But at least they got the blood they needed.
I'm feeling quite fed up at the moment as I've been exhausted today as well. Up til now I've been tired every day, but have only been having maybe one day a week where I've felt really exhausted. However towards the end of this week I've had 3 exhausted days out of 4 :( And my tiredness doesn't seem to be related to my sleeping as I had 11 hours of sleep last night, but still feel very tired today. I'm fed up because I just want to get on with my life, but at the moment I'm struggling to cope at school and am concerned about how I'll manage in Japan. Today I've just been relaxing, have read a lot and watched some TV and now I'm going to watch a film. I've no idea how I'll feel tomorrow, so will probably just relax, although I do have some homework and coursework I need to do. And tomorrow afternoon me and my dad are going to the cinema to see Slumdog Millionaire.
However on a more positive note, reducing my feeds for Japan is going really well. This week is my first night on just 3 nights of feed :) While I was on 4 or more nights per week I never had 2 nights off in a row as I tried to space my nights off throughout the week. However now I'm down to just 3 nights of feed per week, I have to have 2 nights off feed together. So I didn't have my feed last night and I'm not having it tonight either :D
Over the last couple of days I've been writing up my medical history for this blog. I've finished writing it now and it's in 4 quite long instalments. So I'm planning to post one instalment up each day, starting tomorrow, so you don't get overwhelmed with a lot to read. I hope this is ok. So medical history part 1 will finally be up tomorrow :)
Saturday, 31 January 2009
Wednesday, 28 January 2009
Japanese meeting and a day off school
Yesterday evening me and my parents attended a meeting at school about the Japan trip. Before the main meeting we met with Mrs M and the head of languages (who has all the details of the trip, but won't be coming to Japan) to discuss our concerns. One of my worries was being able to find enough to eat, as I have to avoid high risk foods (raw fish, shellfish...). But I've been reassured by the head of languages, who has been to Japan, that there should be plenty of options for me. We're only going to one sushi restaurant, but they do vegetarian options, so that should be fine. Another concern was that my phone won't work in Japan, but that's been solved. Mrs M is renting a phone while we're in Japan, so the school can arrange for me to rent a phone too. Hopefully I won't need to use it, but I'll be reassured to have a phone with me in case of emergencies. And the final concern I had was about insurance. Last week I let the finance office know more details of my transplant and they were going to pass that onto the insurance company, but I've not yet heard anything back. So Mrs Morton is going to chase that up, and I know if she says she'll sort something then it'll get sorted :)
My preparations for Japan are going really well. I've done the majority of my shopping, so only have a few little bits left to buy and some spending money to exchange. And the decreasing of my overnight feeds is going brilliantly. Just before Christmas I was on enteral feeds 7 nights per week, but now I'm down to just 3 nights per week, and my weight is staying stable. So it looks like I should be able to drop my feeds completely while in Japan :)
I can't believe it's only 15 days til I fly to Japan! The meeting yesterday made me realise just how close the trip is and that most things are sorted now, so I'm definitely going to be able to go. I'm so excited :D
This morning when my alarm went off at 7am, I was really tired and just couldn't get up. So I've stayed at home today. My tiredness just builds up and then every so often I feel really rubbish for a day or two because I'm exhausted. I've spent today relaxing (I've just finished a brilliant book called 'The Virgin Suicides', recommended to me by Becky :)) and am feeling better now, so should be back at school tomorrow. Luckily today I only missed 2 lessons, so I won't have too much catching up to do when I go back. I'm a bit concerned about being tired in Japan, but I know I'll just do what I can and make the best of it.
I'm sorry I've not got a post up yet with more details of my medical history, but as I've said before it'll be long, so I've not had time to do it yet. But it will come.
My preparations for Japan are going really well. I've done the majority of my shopping, so only have a few little bits left to buy and some spending money to exchange. And the decreasing of my overnight feeds is going brilliantly. Just before Christmas I was on enteral feeds 7 nights per week, but now I'm down to just 3 nights per week, and my weight is staying stable. So it looks like I should be able to drop my feeds completely while in Japan :)
I can't believe it's only 15 days til I fly to Japan! The meeting yesterday made me realise just how close the trip is and that most things are sorted now, so I'm definitely going to be able to go. I'm so excited :D
This morning when my alarm went off at 7am, I was really tired and just couldn't get up. So I've stayed at home today. My tiredness just builds up and then every so often I feel really rubbish for a day or two because I'm exhausted. I've spent today relaxing (I've just finished a brilliant book called 'The Virgin Suicides', recommended to me by Becky :)) and am feeling better now, so should be back at school tomorrow. Luckily today I only missed 2 lessons, so I won't have too much catching up to do when I go back. I'm a bit concerned about being tired in Japan, but I know I'll just do what I can and make the best of it.
I'm sorry I've not got a post up yet with more details of my medical history, but as I've said before it'll be long, so I've not had time to do it yet. But it will come.
Monday, 26 January 2009
My family
I've taken this idea from a recent blog post of Becky's :) I thought I'd write a little about my family as I'm sure they will often be mentioned on my blog.
I live with my mum (Ann), my dad (Chris) and 2 brothers (Alfie and Chris).
My mum and me are very alike (everyone says) in both looks and interests. However my mum does have one hobby (or should I say obsession?!) that I don't share. My mum is a mad knitter and is always knitting something. Her latest knitting project has been toy mice, but she has also knitted wrist warmers, baby rattles, bowls, balls, socks, toy birds, leg warmers, flowers, bags, hats... This all started over 2 years ago when I was in hospital for my transplant and mum took up knitting again to pass the time and made scarves for the nurses for Christmas presents. And she's not stopped since! My mum works part time in our local library as, like me, she loves books.
My dad works full time as an area manager of housing for the homeless. I'm very proud of him for doing such an important and worthwhile job :) Me and my dad aren't particularly alike, but we get on well. He often teases me though, but don't most dads? In his spare time my dad likes fishing and playing the guitar. He's taught himself the acoustic guitar, but only knows a limited amount of chords, so everything he plays sounds the same! Lol.
My younger brother, Alfie, is 15, so he's in year 11 at school (his GCSE year). Me and Alf are complete opposites, like chalk and cheese, so we don't get on very well. Alf often grunts, rather than talks, and spends most of his time in his room on his computer or new Xbox.
My older (half) brother, Chris, is 29 and still lives at home. He's moved out a few times, but keeps coming back, lol. I get on quite well with Chris, although sometimes he annoys me of course, but that's probably because there's a big age gap between us (11 years). He likes playing the electric guitar, which he's been playing since he taught himself to play it at the age of 12. Chris is a really good guitarist and is in a band with some friends.
My brother Chris has a girlfriend, Sophie. She's 19 and very nice, though quite shy. She often spends time here with Chris.
Another family member I might mention is my nan, who is my dad's mum. She lives in the next village (about 5 miles away), so we see her quite often. She's 85, but doing well :) She does have mobility problems though after an accident about 4 or 5 years ago in which she badly broke her leg, and it's not healed properly.
I have lots of cousins too, but we don't see them very often, so they won't be mentioned much.
I live with my mum (Ann), my dad (Chris) and 2 brothers (Alfie and Chris).
My mum and me are very alike (everyone says) in both looks and interests. However my mum does have one hobby (or should I say obsession?!) that I don't share. My mum is a mad knitter and is always knitting something. Her latest knitting project has been toy mice, but she has also knitted wrist warmers, baby rattles, bowls, balls, socks, toy birds, leg warmers, flowers, bags, hats... This all started over 2 years ago when I was in hospital for my transplant and mum took up knitting again to pass the time and made scarves for the nurses for Christmas presents. And she's not stopped since! My mum works part time in our local library as, like me, she loves books.
My dad works full time as an area manager of housing for the homeless. I'm very proud of him for doing such an important and worthwhile job :) Me and my dad aren't particularly alike, but we get on well. He often teases me though, but don't most dads? In his spare time my dad likes fishing and playing the guitar. He's taught himself the acoustic guitar, but only knows a limited amount of chords, so everything he plays sounds the same! Lol.
My younger brother, Alfie, is 15, so he's in year 11 at school (his GCSE year). Me and Alf are complete opposites, like chalk and cheese, so we don't get on very well. Alf often grunts, rather than talks, and spends most of his time in his room on his computer or new Xbox.
My older (half) brother, Chris, is 29 and still lives at home. He's moved out a few times, but keeps coming back, lol. I get on quite well with Chris, although sometimes he annoys me of course, but that's probably because there's a big age gap between us (11 years). He likes playing the electric guitar, which he's been playing since he taught himself to play it at the age of 12. Chris is a really good guitarist and is in a band with some friends.
My brother Chris has a girlfriend, Sophie. She's 19 and very nice, though quite shy. She often spends time here with Chris.
Another family member I might mention is my nan, who is my dad's mum. She lives in the next village (about 5 miles away), so we see her quite often. She's 85, but doing well :) She does have mobility problems though after an accident about 4 or 5 years ago in which she badly broke her leg, and it's not healed properly.
I have lots of cousins too, but we don't see them very often, so they won't be mentioned much.
'Seven Pounds' and Japan trip scare
Yesterday afternoon me and my mum went to see 'Seven Pounds'. I was aware the critics hadn't given it good reviews, but after reading some better reviews about it by other transplant recipients I decided to see it to make up my own mind about it. I'm very glad I went to see it, but I probably wouldn't recommend it or watch it again. The acting was great, the characters believable, and the film was very moving and emotional. And it was definitely thought provoking, and should get people talking about organ donation. But I didn't think the film was put together very well. Some sections seemed to drag on, yet some little bits weren't explained so the complex plot was confusing and difficult to understand. Luckily I'd read 3 different synopses online before I went, so I knew the plot. If you're going to see it I'd advise doing the same. I also picked out a few (major) medical mistakes in the film, which was disappointing as I thought they should have done their research. It wasn't a bad film, but I thought it could have been much better.
This morning at school I discovered that my Japanese teacher (Mr I) isn't yet back from Japan (he flew out urgently last Monday). So me and my friends were concerned about the trip as we are due to fly in just 17 days! Then we heard that Mrs M, the head of sixth form, wanted to meet with us all in period 4. That made me even more worried for the trip as I thought an urgent meeting with the head of sixth form must be serious. After worrying all morning we met in Mrs M's office. Mrs M told us that Mr I would be away for some considerable time and so wouldn't be able to take us on the trip. However instead of cancelling the trip Mrs M said she'd take Mr I's place. So, we're still going to Japan! I'm very relieved :D But we are a bit concerned that we don't have a Japanese teacher and we have oral exams to do and our final exams in only 4 months (May). But that should be sorted as they're trying to sort us out a substitute teacher ASAP.
My friends' opinions on Mrs M taking Mr I's place on the trip vary. Catherine is happy about it as she knows Mrs M a lot better than she did Mr I (Catherine doesn't take Japanese lessons). However, Abi isn't happy as she doesn't like Mrs M as she can be quite strict. I'm not sure about it. I know Mrs M is very organised and efficient, so the trip should go smoothly. And she also knows about my health (whereas Mr I didn't, although I was going to talk to him about it), which is a relief. However Mrs M is quite strict, whereas Mr I was very relaxed and laid-back.
Tomorrow evening there's an information evening at school about the Japan trip, so I should find out more then. And me and my parents are going to meet with Mrs M and Miss I (the other adult going on the trip - she's Japanese and a teaching assistant at the school) before the official meeting to discuss the trip further - our concerns, my health... I'll post on here either after the meeting tomorrow or on Wednesday about it.
This morning at school I discovered that my Japanese teacher (Mr I) isn't yet back from Japan (he flew out urgently last Monday). So me and my friends were concerned about the trip as we are due to fly in just 17 days! Then we heard that Mrs M, the head of sixth form, wanted to meet with us all in period 4. That made me even more worried for the trip as I thought an urgent meeting with the head of sixth form must be serious. After worrying all morning we met in Mrs M's office. Mrs M told us that Mr I would be away for some considerable time and so wouldn't be able to take us on the trip. However instead of cancelling the trip Mrs M said she'd take Mr I's place. So, we're still going to Japan! I'm very relieved :D But we are a bit concerned that we don't have a Japanese teacher and we have oral exams to do and our final exams in only 4 months (May). But that should be sorted as they're trying to sort us out a substitute teacher ASAP.
My friends' opinions on Mrs M taking Mr I's place on the trip vary. Catherine is happy about it as she knows Mrs M a lot better than she did Mr I (Catherine doesn't take Japanese lessons). However, Abi isn't happy as she doesn't like Mrs M as she can be quite strict. I'm not sure about it. I know Mrs M is very organised and efficient, so the trip should go smoothly. And she also knows about my health (whereas Mr I didn't, although I was going to talk to him about it), which is a relief. However Mrs M is quite strict, whereas Mr I was very relaxed and laid-back.
Tomorrow evening there's an information evening at school about the Japan trip, so I should find out more then. And me and my parents are going to meet with Mrs M and Miss I (the other adult going on the trip - she's Japanese and a teaching assistant at the school) before the official meeting to discuss the trip further - our concerns, my health... I'll post on here either after the meeting tomorrow or on Wednesday about it.
Saturday, 24 January 2009
Orthodontist and school
On Thursday I had an orthodontist appointment. I've had a few meetings with my orthodontist so far, but on Wednesday the date was set for me to have my braces fitted! I've always known I need orthodontic treatment, but until now my health has always been my main priority, and getting my teeth sorted out was just pushed aside. But as my health is stable at the moment, I've begun trying to get my teeth fixed. Apparently my jaws are too small for all my teeth, so I need 4 teeth removed and fixed braces. I'm going to have the braces fitted first (at the end of March) and then the teeth will be extracted at some point after that. I'm quite apprehensive about it all (especially as a very helpful friend has been telling me how much braces hurt), but it'll be nice to get my teeth sorted :) I'm scared about the extractions (as I've only ever had one baby tooth out before) but I've not got a date for that yet, so that's something to worry about nearer the time.
Then on Thursday night when I got home I found a message on the answer machine from hospital B, saying that they'd phoned hospital H for my blood results, but they weren't complete. They want a full set of bloods doing before I go to Japan, so I've got to have them redone this week. I only have a few good veins on the back of one hand, but that hand is still very bruised from when I last had blood taken, so I'm hoping the bruising will go down over the next few days. I'm surprised that some bloods were missed out, as I took the blood forms from hospital A directly to hospital H, so the forms must have been wrong. The forms were written at my transition clinic, so I think it was probably confusion between my two consultants that caused the problems. Hopefully that wont happen again though.
School has been interesting this week. Since I dropped 2 subjects just before Christmas I've gained quite a few free periods, which is nice :) So I'm finding school easier to cope with now and I even got to come home early on the bus a few days this week. I've still got a lot of coursework though and lots of deadlines are looming around half term. At the moment it's science coursework that's the biggest worry as all environmental systems coursework has to be completed before I go to Japan. We need to have done 40 hours of practical work, but at my last count on Friday I only had 29. So I've got to somehow get 11 hours of coursework in 2 and a half weeks! Eek! Biology coursework all has to be completed one week after I get back from Japan. I should have enough hours, but I've got a bit behind on my experiment write-ups, so I've got 5 outstanding at the moment. And we've got English individual oral commentaries a few days after I get back from Japan. We're given an extract from one of four texts, have 20 minutes to plan and then have to give a 12 minute oral commentary on it. We've studied 2 of the 4 texts so far and I don't really understand either of them, lol.
On Wednesday in biology we did an interesting experiment investigating maggot behaviour! My experiment involved seeing whether maggots preferred the light or dark, but my maggots seemed very random. I didn't mind handling the maggots, but I was one of only 2 in our class of 15 that wasn't scared to touch them!
I'm getting very excited about Japan now with only 18 and a half days to go :D
However, my Japanese teacher (who is running the trip) had to fly urgently back to Japan on Monday (no-one knows why, but we guess that someone in his family is probably ill), so we're a bit concerned for the trip as we don't know when he'll be back. We're supposed to be having an information evening next Tuesday, so if he's back by then I'll find out a bit more about the trip.
On Thursday I went to an electrical shop in town to enquire about transformers and adaptors to enable me to charge my electrical equipment (phone, iPod and camera) in Japan. The cheapest transformer I could buy cost me £25! But I bought it as I couldn't see another option, and Catherine has said she'll put some money towards it so we can both use it in Japan.
Tomorrow I'm going to the cinema with my parents to see Will Smith's latest film, called 'Seven Pounds'. It's about organ donation so should be interesting. Critics haven't given it very good reviews, but I know some transplant recipients who have seen it and liked it, so I want to see it to make up my own mind about it. I'll let you know what I think.
Sorry this post is another long one. I just can't seem to write short blog entries, lol.
Then on Thursday night when I got home I found a message on the answer machine from hospital B, saying that they'd phoned hospital H for my blood results, but they weren't complete. They want a full set of bloods doing before I go to Japan, so I've got to have them redone this week. I only have a few good veins on the back of one hand, but that hand is still very bruised from when I last had blood taken, so I'm hoping the bruising will go down over the next few days. I'm surprised that some bloods were missed out, as I took the blood forms from hospital A directly to hospital H, so the forms must have been wrong. The forms were written at my transition clinic, so I think it was probably confusion between my two consultants that caused the problems. Hopefully that wont happen again though.
School has been interesting this week. Since I dropped 2 subjects just before Christmas I've gained quite a few free periods, which is nice :) So I'm finding school easier to cope with now and I even got to come home early on the bus a few days this week. I've still got a lot of coursework though and lots of deadlines are looming around half term. At the moment it's science coursework that's the biggest worry as all environmental systems coursework has to be completed before I go to Japan. We need to have done 40 hours of practical work, but at my last count on Friday I only had 29. So I've got to somehow get 11 hours of coursework in 2 and a half weeks! Eek! Biology coursework all has to be completed one week after I get back from Japan. I should have enough hours, but I've got a bit behind on my experiment write-ups, so I've got 5 outstanding at the moment. And we've got English individual oral commentaries a few days after I get back from Japan. We're given an extract from one of four texts, have 20 minutes to plan and then have to give a 12 minute oral commentary on it. We've studied 2 of the 4 texts so far and I don't really understand either of them, lol.
On Wednesday in biology we did an interesting experiment investigating maggot behaviour! My experiment involved seeing whether maggots preferred the light or dark, but my maggots seemed very random. I didn't mind handling the maggots, but I was one of only 2 in our class of 15 that wasn't scared to touch them!
I'm getting very excited about Japan now with only 18 and a half days to go :D
However, my Japanese teacher (who is running the trip) had to fly urgently back to Japan on Monday (no-one knows why, but we guess that someone in his family is probably ill), so we're a bit concerned for the trip as we don't know when he'll be back. We're supposed to be having an information evening next Tuesday, so if he's back by then I'll find out a bit more about the trip.
On Thursday I went to an electrical shop in town to enquire about transformers and adaptors to enable me to charge my electrical equipment (phone, iPod and camera) in Japan. The cheapest transformer I could buy cost me £25! But I bought it as I couldn't see another option, and Catherine has said she'll put some money towards it so we can both use it in Japan.
Tomorrow I'm going to the cinema with my parents to see Will Smith's latest film, called 'Seven Pounds'. It's about organ donation so should be interesting. Critics haven't given it very good reviews, but I know some transplant recipients who have seen it and liked it, so I want to see it to make up my own mind about it. I'll let you know what I think.
Sorry this post is another long one. I just can't seem to write short blog entries, lol.
Organ Donation in the news
Organ donation was back in the news on Thursday, which is great as it always raises awareness. Here is an article by the BBC summarising the current shortage of organ donors: http://news.bbc.co.uk/1/hi/health/7844015.stm
Justine had a double lung transplant. Here she is speaking to the BBC: http://news.bbc.co.uk/1/hi/health/7843920.stm
Lucy had a heart transplant 2 years ago:
Aaron had a transplant like mine when he was just 3 years old. He's 12 now and he does a lot of campaigning to raise awareness of the need for organ donors:
If you aren't already on the organ donor register then you can sign up at http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/how_to_become_a_donor.jsp
Justine had a double lung transplant. Here she is speaking to the BBC: http://news.bbc.co.uk/1/hi/health/7843920.stm
Lucy had a heart transplant 2 years ago:
- http://www.itvlocal.com/thamesvalley/news/?void=280136 - Lucy and her family spoke to ITV
- http://www.bbc.co.uk/iplayer/episode/p001zcc9/Charlie_Crocker_22_01_2009/ - Lucy's mum Bev spoke to BBC Radio Solent (the feature on organ donation starts at 1:12:40. Bev's section starts at 1:19:50 and then resumes at about 1:27:20)
Aaron had a transplant like mine when he was just 3 years old. He's 12 now and he does a lot of campaigning to raise awareness of the need for organ donors:
- http://news.bbc.co.uk/1/hi/scotland/7843803.stm - Aaron speaking to BBC news
- http://www.itvlocal.com/border/news/?player=BOR_News_15&void=280186 - Aaron on his local ITV news
- http://www.itvlocal.com/border/news/?player=BOR_News_15&void=280053 - Aaron on his local ITV news
- http://video.stv.tv/bc/news-090122-s2-donors - Aaron and Eloise (a heart transplant recipient) on Scotland today
If you aren't already on the organ donor register then you can sign up at http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/how_to_become_a_donor.jsp
Monday, 19 January 2009
Japan!
I've mentioned this briefly in previous posts, but thought I'd tell you a bit more about my trip to Japan that is coming up very soon. During half term (and a couple of days before it) I'm going on a school trip to Japan. We'll be staying in Kyoto for 8 nights and doing lots of sightseeing, learning about Japanese culture and of course doing a bit of shopping too! In my 6th form we have the option to study Japanese (which I've been doing since I started there in September 2007) so every year the Japanese teacher organises a trip like this. There'll be 2 teachers and 8 students going, which is a nice number I think - not too many, but not too few. And within the 7 other students going is my best friend from school (Catherine) and another close friend (Abi) :D
I'm really excited about this trip as it'll be an amazing experience going to Japan and it'll also be the first time I've spent more than 1 night away from my parents. Before my transplant I was on intravenous feeds (putting nutrients etc straight into my bloodstream via my heart through a central line) every night, and setting it all up was a sterile procedure every morning and evening, so it meant I wasn't able to go on school trips unless my mum or dad came with me to help out. I could manage 1 night sleepovers at friends houses though as I could get connected before I went. And since my transplant I've not yet been well enough, and the enteral feeds are still a bit complicated to organise (though not as complicated as my intravenous feeding was). But now with my eating going as well as it is, I shouldn't need to be on any enteral feeds while I'm in Japan.
There are still quite a few things that need organising before Japan, but it's all going ok. I have been abroad since my transplant (I went to Florida with my family last month - more to come in another post), but since that was a wish granted for me by the Make-A-Wish foundation, they organised everything for us. And of course I was with my parents too. So Japan is a bit more complicated to organise as I've got to sort everything out myself. I'm currently trying to sort out my insurance as the standard insurance my teacher got for us all won't cover me if I need any medical treatment in Japan. I've also got to take all my medications with me as well as bottles of sterile water to drink on the plane (there's a bug in normal water, both tap and bottled, that is harmless to 'normal' people, but can be harmful to those who've had a small bowel transplant) and letters to get them allowed through with me. In Japan I'll be able to manage ok with the water by boiling and cooling it before I drink it, just like I do at home. And I've got to be wary of what I eat while I'm in Japan as I have to avoid high risk foods, so I can't eat any raw fish or shellfish etc. I'm also a bit nervous about what would happen if I had a medical emergency while away - like an upset stomach or suspected rejection - but hopefully everything will go smoothly. I'm also a bit concerned about my stamina, as it's not too good at the moment and I get tired easily, but I hope it'll be ok.
I'm quite a private person and when I started at 6th form after my transplant I decided not to tell any other students about my medical history, as I didn't want to be treated 'differently' like I had been at my previous school. Over Christmas I told Catherine (my best friend at school) everything as she'll be going to Japan too. She was very understanding and I'm relieved that there'll be someone on the trip who I can speak to if I'm having a bad day or anything like that.
I know that some of the things I've mentioned in this post about my medical history and transplant need a bit more explaining and I intend to make a post about that, but I know it'll be a long post and I've not got the time to do it tonight.
I'm really excited about this trip as it'll be an amazing experience going to Japan and it'll also be the first time I've spent more than 1 night away from my parents. Before my transplant I was on intravenous feeds (putting nutrients etc straight into my bloodstream via my heart through a central line) every night, and setting it all up was a sterile procedure every morning and evening, so it meant I wasn't able to go on school trips unless my mum or dad came with me to help out. I could manage 1 night sleepovers at friends houses though as I could get connected before I went. And since my transplant I've not yet been well enough, and the enteral feeds are still a bit complicated to organise (though not as complicated as my intravenous feeding was). But now with my eating going as well as it is, I shouldn't need to be on any enteral feeds while I'm in Japan.
There are still quite a few things that need organising before Japan, but it's all going ok. I have been abroad since my transplant (I went to Florida with my family last month - more to come in another post), but since that was a wish granted for me by the Make-A-Wish foundation, they organised everything for us. And of course I was with my parents too. So Japan is a bit more complicated to organise as I've got to sort everything out myself. I'm currently trying to sort out my insurance as the standard insurance my teacher got for us all won't cover me if I need any medical treatment in Japan. I've also got to take all my medications with me as well as bottles of sterile water to drink on the plane (there's a bug in normal water, both tap and bottled, that is harmless to 'normal' people, but can be harmful to those who've had a small bowel transplant) and letters to get them allowed through with me. In Japan I'll be able to manage ok with the water by boiling and cooling it before I drink it, just like I do at home. And I've got to be wary of what I eat while I'm in Japan as I have to avoid high risk foods, so I can't eat any raw fish or shellfish etc. I'm also a bit nervous about what would happen if I had a medical emergency while away - like an upset stomach or suspected rejection - but hopefully everything will go smoothly. I'm also a bit concerned about my stamina, as it's not too good at the moment and I get tired easily, but I hope it'll be ok.
I'm quite a private person and when I started at 6th form after my transplant I decided not to tell any other students about my medical history, as I didn't want to be treated 'differently' like I had been at my previous school. Over Christmas I told Catherine (my best friend at school) everything as she'll be going to Japan too. She was very understanding and I'm relieved that there'll be someone on the trip who I can speak to if I'm having a bad day or anything like that.
I know that some of the things I've mentioned in this post about my medical history and transplant need a bit more explaining and I intend to make a post about that, but I know it'll be a long post and I've not got the time to do it tonight.
Sunday, 18 January 2009
Bethany's gift of life
For a few months now I've been following the story of a little girl called Bethany who was put on the transplant list as a result of liver disease. Before Christmas she had 2 false alarms, but amazingly on Friday Bethany received her new liver. Bethany and her family are in my thoughts as well as the brave donor family who made this possible. You can read more about Bethany's story at http://www.caringbridge.org/visit/bethanysalmon and http://fairenuff-familypficblog.blogspot.com/
This is another example of what an amazing gift organ donation can be. Without it I wouldn't be here now and neither would many of my friends. If you're not already an organ donor consider signing up now at http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/consent.jsp It only takes a couple of minutes to sign up online and you could save lives.
Thank you x
This is another example of what an amazing gift organ donation can be. Without it I wouldn't be here now and neither would many of my friends. If you're not already an organ donor consider signing up now at http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/consent.jsp It only takes a couple of minutes to sign up online and you could save lives.
Thank you x
Transition clinic and Japanese exam
Sorry I've not had chance to write a proper update this week, but I'll try to summarise the main events of my week in this post.
On Wednesday afternoon I had a transition clinic. Before I go any further I'll introduce the main hospitals and doctors that I'll be mentioning in this blog; as it's a public blog I'll use initials instead of complete names. My current hospital (B) is a children's hospital that I've been under since I had my transplant assessment just before my 16th birthday. I had my transplant there and the majority of my care to date has been from there. My consultant from hospital B is Dr G, and my dietician is S. As I'm 18 now my care is gradually being transferred to the adult centre for small bowel transplants, hospital A. My consultant from hospital A is Dr W. And I may also mention my local hospital (H) sometimes. I have bloods etc taken there, and have been under there since I was a baby. I hope that all makes sense.
My clinic on Wednesday was at hospital A with Dr W leading the clinic, but Dr G and S also attended. My dad accompanied me as I don't drive yet, but he stayed outside the room for most of the clinic (whereas him or my mum usually come in with me), only coming in near the end. We had a chat about Japan (I'm going on a school trip there in 3 and a half weeks!) and I just confirmed contact numbers, what to do in case of an emergency etc. Then we talked a bit about my feed regime: before my transplant I was fed intravenously (straight into my heart) and couldn't eat at all, but since my transplant I've been fed enterally (into my stomach) and have been building up my oral intake. At the moment my appetite is great and my overnight enteral feeds are gradually being reduced with the hope of getting me completely off them for Japan. Just before Christmas I was on feeds 7 nights per week, but now it's down to just 4 nights per week and my weight is staying stable. So S said it was all going great and I should be able to go to Japan without the feeds :D
The main issue that I wanted to discuss at the clinic was my tiredness and lack of energy. Everything was going really well until I had a planned operation in July of last year. After my transplant I had an illeostomy formed to allow easy monitoring of my new bowel, but after 2 years if there's been no rejection then a reversal is considered. As I was doing so well post transplant and had had no rejection (and still haven't, fingers crossed), it was agreed that I could have my illeostomy reversed just 20 months post transplant (last July). It was quite a big operation, but I wasn't too worried as it would be nowhere near the scale of my transplant surgery. Surgically it all went really well, but since July I've been struggling with my energy levels and have been very tired most of the time (whereas before July I felt great). This has been getting in the way of my life, as I just want to be able to do everything, and has resulted in me having to drop the qualification I'm aiming for at school down to a lower one, as I couldn't keep up with all the work. Since the summer at hospital B I had lots of blood taken to test for everything, but nothing came back positive. Dr G also asked around other paediatricians, but no-one had any ideas what could be causing my fatigue. At the clinic on Wednesday I brought the issue up again, and Dr W (who I'd not spoken to about it before) asked me loads of questions and then said he had an idea. My dad was called back into the room and Dr W explained his theory.
He said that this extreme tiredness was common in young adults and adults after an illness (or in my case, an operation) and he said it usually occured in people who were very enthusiastic about life (just like me). It is sometimes called chronic fatigue syndrome. He likened it to trying to get back on a motorway directly into the fast lane, whereas really you need to go into the middle lane first. Even though my operation was planned, it was a big operation, and I think I underestimated the scale of it. Afterwards I was trying to do everything and it was just too much too soon. He thought that it was unlikely that anything would be found in my bloods to explain my tiredness, and although there's no quick fix solution, I can help myself by accepting that I can't do everything and maybe need to do a bit less for a while. He also thought that dropping down my qualification at school was the right decision and may help. So I'm glad I've got an explanation for my tiredness, but I'm dissapointed that there's no quick cure.
Overall both my consultants were very happy with my progress and my next outpatient clinic will be at hospital A in 6 months :) And while I was at the clinic I also briefly saw my friend A who also had her transplant at hospital B and because she's the same age as me we're both going through the transition to adult services together. It was nice to see her looking so well.
After the clinic I was feeling very tired, so instead of going to the opticians I went straight home to prepare for my Japanese group oral exam the next day. I was quite nervous as it was my first Japanese oral, but my group did lots of preparation and when it came to performing it, it went really well. My Japanese teacher is a bit rubbish at giving feedback, but we think it went relatively well. With the qualifications I'm doing everything is graded on a scale of 1 - 7 with 1 being the worst and 7 being the best. For that group oral (the first of 3) I got a level 5/6 which I was very happy with, especially as I'm not very confident with speaking Japanese. We have another group oral at the end of this month and one next month. The best of the 3 group orals will be worth 20% of my final Japanese grade. Then in March I'll have an individual oral which will be worth another 20% of my final grade.
Thursday evening I was planning to go on a school trip to the theatre to see Hamlet, but I stayed at home instead as I was just too tired to go out.
Friday after school I went to hospital H for bloods. They should have been done at hospital A on Wednesday, but the queue for blood tests was really long and we'd have had to wait for around 2 hours! So we took the forms to hospital H to have them done there instead, where we didn't have to wait. It wasn't a good experience though as the first attempt resulted in not nearly enough blood and a hugely bruised vein, but the second attempt got enough blood. Then that evening my friend Claire came round and we chatted and had a Wii marathon which was a great way to relax after a busy week.
Sorry for the length of this update, lol.
On Wednesday afternoon I had a transition clinic. Before I go any further I'll introduce the main hospitals and doctors that I'll be mentioning in this blog; as it's a public blog I'll use initials instead of complete names. My current hospital (B) is a children's hospital that I've been under since I had my transplant assessment just before my 16th birthday. I had my transplant there and the majority of my care to date has been from there. My consultant from hospital B is Dr G, and my dietician is S. As I'm 18 now my care is gradually being transferred to the adult centre for small bowel transplants, hospital A. My consultant from hospital A is Dr W. And I may also mention my local hospital (H) sometimes. I have bloods etc taken there, and have been under there since I was a baby. I hope that all makes sense.
My clinic on Wednesday was at hospital A with Dr W leading the clinic, but Dr G and S also attended. My dad accompanied me as I don't drive yet, but he stayed outside the room for most of the clinic (whereas him or my mum usually come in with me), only coming in near the end. We had a chat about Japan (I'm going on a school trip there in 3 and a half weeks!) and I just confirmed contact numbers, what to do in case of an emergency etc. Then we talked a bit about my feed regime: before my transplant I was fed intravenously (straight into my heart) and couldn't eat at all, but since my transplant I've been fed enterally (into my stomach) and have been building up my oral intake. At the moment my appetite is great and my overnight enteral feeds are gradually being reduced with the hope of getting me completely off them for Japan. Just before Christmas I was on feeds 7 nights per week, but now it's down to just 4 nights per week and my weight is staying stable. So S said it was all going great and I should be able to go to Japan without the feeds :D
The main issue that I wanted to discuss at the clinic was my tiredness and lack of energy. Everything was going really well until I had a planned operation in July of last year. After my transplant I had an illeostomy formed to allow easy monitoring of my new bowel, but after 2 years if there's been no rejection then a reversal is considered. As I was doing so well post transplant and had had no rejection (and still haven't, fingers crossed), it was agreed that I could have my illeostomy reversed just 20 months post transplant (last July). It was quite a big operation, but I wasn't too worried as it would be nowhere near the scale of my transplant surgery. Surgically it all went really well, but since July I've been struggling with my energy levels and have been very tired most of the time (whereas before July I felt great). This has been getting in the way of my life, as I just want to be able to do everything, and has resulted in me having to drop the qualification I'm aiming for at school down to a lower one, as I couldn't keep up with all the work. Since the summer at hospital B I had lots of blood taken to test for everything, but nothing came back positive. Dr G also asked around other paediatricians, but no-one had any ideas what could be causing my fatigue. At the clinic on Wednesday I brought the issue up again, and Dr W (who I'd not spoken to about it before) asked me loads of questions and then said he had an idea. My dad was called back into the room and Dr W explained his theory.
He said that this extreme tiredness was common in young adults and adults after an illness (or in my case, an operation) and he said it usually occured in people who were very enthusiastic about life (just like me). It is sometimes called chronic fatigue syndrome. He likened it to trying to get back on a motorway directly into the fast lane, whereas really you need to go into the middle lane first. Even though my operation was planned, it was a big operation, and I think I underestimated the scale of it. Afterwards I was trying to do everything and it was just too much too soon. He thought that it was unlikely that anything would be found in my bloods to explain my tiredness, and although there's no quick fix solution, I can help myself by accepting that I can't do everything and maybe need to do a bit less for a while. He also thought that dropping down my qualification at school was the right decision and may help. So I'm glad I've got an explanation for my tiredness, but I'm dissapointed that there's no quick cure.
Overall both my consultants were very happy with my progress and my next outpatient clinic will be at hospital A in 6 months :) And while I was at the clinic I also briefly saw my friend A who also had her transplant at hospital B and because she's the same age as me we're both going through the transition to adult services together. It was nice to see her looking so well.
After the clinic I was feeling very tired, so instead of going to the opticians I went straight home to prepare for my Japanese group oral exam the next day. I was quite nervous as it was my first Japanese oral, but my group did lots of preparation and when it came to performing it, it went really well. My Japanese teacher is a bit rubbish at giving feedback, but we think it went relatively well. With the qualifications I'm doing everything is graded on a scale of 1 - 7 with 1 being the worst and 7 being the best. For that group oral (the first of 3) I got a level 5/6 which I was very happy with, especially as I'm not very confident with speaking Japanese. We have another group oral at the end of this month and one next month. The best of the 3 group orals will be worth 20% of my final Japanese grade. Then in March I'll have an individual oral which will be worth another 20% of my final grade.
Thursday evening I was planning to go on a school trip to the theatre to see Hamlet, but I stayed at home instead as I was just too tired to go out.
Friday after school I went to hospital H for bloods. They should have been done at hospital A on Wednesday, but the queue for blood tests was really long and we'd have had to wait for around 2 hours! So we took the forms to hospital H to have them done there instead, where we didn't have to wait. It wasn't a good experience though as the first attempt resulted in not nearly enough blood and a hugely bruised vein, but the second attempt got enough blood. Then that evening my friend Claire came round and we chatted and had a Wii marathon which was a great way to relax after a busy week.
Sorry for the length of this update, lol.
Tuesday, 13 January 2009
Busy
I just wanted to post a quick update this evening to let you know that I'm still planning to update this blog as regularly as I can, so please keep reading :)
School has been really hectic this week which is why it's been a while since I last posted. I've got a big English coursework essay due in tomorrow and then a scary Japanese group oral exam on Thursday, so I've been working on those this week. I've got a busy few days coming up as tomorrow I've got a hospital appointment (I'll update you on how it goes) and I'm going to the opticians. Then on Thursday I've got my Japanese exam and that night I'm going to the theatre (to see Hamlet with my English class). So it may be the weekend before I can post again.
I've got lots of plans for my upcoming posts when I get some free time. I'm going to summarise my medical history, explain the qualification I'm taking at school (I'm in 6th form, but I'm not doing A Levels) and tell you all about my exciting trip to Japan that's fast approaching :D Plus lots more.
School has been really hectic this week which is why it's been a while since I last posted. I've got a big English coursework essay due in tomorrow and then a scary Japanese group oral exam on Thursday, so I've been working on those this week. I've got a busy few days coming up as tomorrow I've got a hospital appointment (I'll update you on how it goes) and I'm going to the opticians. Then on Thursday I've got my Japanese exam and that night I'm going to the theatre (to see Hamlet with my English class). So it may be the weekend before I can post again.
I've got lots of plans for my upcoming posts when I get some free time. I'm going to summarise my medical history, explain the qualification I'm taking at school (I'm in 6th form, but I'm not doing A Levels) and tell you all about my exciting trip to Japan that's fast approaching :D Plus lots more.
Saturday, 10 January 2009
Welcome to my blog
I've never written a blog before, but after following several blogs I've been inspired to start one of my own. I'm not sure exactly what I'll post on here about, but I think I'll write about my transplant, life after it, and my life in general. I'll try to post regularly, but with school being very stressful at the moment, I'm not sure how often that will be.
So, a little about me...
In November 2006 I received a life-saving multi-organ transplant. I intend to make some posts solely about my transplant shortly, so I won't write any more about the hows or whys now. I currently have a much better quality of life than I ever did before my transplant, but my health isn't 100% perfect. However, this blog won't just be about my transplant and my health, as I intend it to be about other aspects of my life too.
I'm currently in year 13 (my final year of 6th form) and have my final exams in May. So school is currently very hectic trying to meet all the coursework deadlines.
I enjoy life and try to make the most of it, as I know that if I hadn't received my gift of life back in 2006 then I wouldn't still be here now. I'm eternally grateful to my donor. I also try to raise awareness of the need for organ donors as much as I can.
So, a little about me...
In November 2006 I received a life-saving multi-organ transplant. I intend to make some posts solely about my transplant shortly, so I won't write any more about the hows or whys now. I currently have a much better quality of life than I ever did before my transplant, but my health isn't 100% perfect. However, this blog won't just be about my transplant and my health, as I intend it to be about other aspects of my life too.
I'm currently in year 13 (my final year of 6th form) and have my final exams in May. So school is currently very hectic trying to meet all the coursework deadlines.
I enjoy life and try to make the most of it, as I know that if I hadn't received my gift of life back in 2006 then I wouldn't still be here now. I'm eternally grateful to my donor. I also try to raise awareness of the need for organ donors as much as I can.
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