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.