Lots of positives

After my last post I had a few more bad days, where I continued to feel exhausted and very fed up. However, on Sunday evening I felt a bit better and I had a good day yesterday :) Yesterday I also sat my first of thirteen exams. It was an English literature exam, lasting for 2 hours, and it wasn't a disaster! ;) I think it went quite well, although it's very difficult to tell. Today I have no exams, so am planning to spend the day sorting emails and phone calls out and of course doing some revision for tomorrow's exams. Tomorrow I have 4 exams totalling five and a quarter hours!!

As I've said in a previous post, my GP is struggling to get me a referral to a local M.E. unit at the moment. So I'm going to try to speak to my adult consultant, Dr W, to see if there's an M.E. unit at hospital A, as it's a big hospital. He also has lots of contacts, so I hope he'll be able to help. However, as my outpatient clinics are now 6 monthly, my next appointment with him isn't until July 1st, which to me seems a long time to wait, as I know if he puts me a referral through there will then be a wait for that. So I'm hoping to ring his secretary this week to see if the appointment can be brought forward at all.

On a more positive note I've recently sent off all the forms to enter this year's British Transplant Games which take place in Coventry from the 30th July to the 3rd August. I've entered 3 events - 50m backstroke, 50m breastroke and 10 pin bowling - but I'm not at all sporty and struggling with my energy at the moment. I'll have a try at the events if I feel up to it, but if not I can just support my team (hospital B's children's team). I've never been before, but it sounds like a great social event, so I'm really looking forward to it. While I'm there I'll also be introduced to the adult team from hospital A, so I can hopefully particiapte with their team in the future.

And some more very exciting news is that in August I hope to fly out to Pittsburg in the USA to help out at a summer camp for children who've had liver and/or small bowel transplants :D I first met Beverly, the doctor who runs the camp, at the Intestinal Study day at hospital B, which I blogged about here. The actual camp runs from Friday 14th August to Monday 17th August, but I'd like to fly out a few days earlier and fly back a few days later to leave time to get over jet-lag and hopefully see some of Pittsburg. It looks like my dietician and one of the liver nurses from hospital B will be going too and possibly some other children from hospital B who've had transplants like mine. The camp takes children from 7 to 17 years old, but because I'm 18 I'd be a junior counsellor ;) All of the junior counsellors there will also be transplant recipients. It sounds like a fantastic opportunity to meet other people my age who've had small bowel transplants, as they're much more common in the USA than here in England. Just to give you an idea of the numbers, here in England, very few adults have received small bowel transplants, I think the number is around 10. I was the 43rd (I think) child in the UK to receive a small bowel transplant, and at present just over 60 children have been transplanted. The longest survivors have now had their transplants for just over 10 years. However, the survival rate isn't that good and the majority of small bowel transplant recipients are under the age of 2 at the time of transplant, so I haven't met many small bowel transplant recipients my age. There is only one other small bowel transplant reciepient now transitioning from hospital B to hospital A with me. I hope to hear more about the camp from Beverly soon, but she's in the middle of moving hospitals, so it might be a few weeks, but I'll let you know when I hear more.

My weight this morning was the same as last week, which I was very relieved to see. When I'm at my most exhausted my appetite greatly decreases, which makes keeping my weight stable quite difficult. However as yesterday was a good day, I've got my fingers crossed that this week will be a good week and my appetite will return a bit.

Last night I discovered that my braces have broken - again! I've not quite had them for 6 weeks and this is the 3rd time I've had a problem with them :( I phoned the orthodontist this morning and have got an appointment to have them fixed a week on Friday.

I've just realised how long this blog is, so I think I'll stop now ;)