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.