BTG and my health

My plan of avoiding rice to help my tummy aches hasn't worked. After stopping eating rice I had no tummy aches for 5 days, but then they came back again, just as bad as before. Very frustrating. But I've had a chat to my parents and we've thought of another plan that might help my tummy aches, so we're giving that a try and if it doesn't work I'm going to contact my consultant from Hospital A to ask his advice. Because a transplanted bowel doesn't have the nerve connections a normal bowel has, peristalsis (the contractions of the muscles of the digestive system to push food along) either doesn't occur at all or occurs less than normal (can't quite remember). So food moves through my digestive system much faster than it should, but I take some tablets called Loperamide to slow it down. I used to take lots of these, but had got it down to a very small dose. Now I've tried increasing my dose slightly to see if this slows my digestive system down and eases my stomach aches. Fingers crossed it helps.

Last Monday I had a lovely day when an old friend came round. I was at secondary school with K, but hadn't seen her properly for around 3 years. We lost touch for a while, but got communicating again through Facebook quite recently and so I invited her round. It was great to catch up with K and hear about what she's been up to since I last saw her. There is only one other friend I've kept in touch with from secondary school - F. I've seen F a couple of times over the last few years, most recently around Christmas time last year. She's coming round a week on Thursday and I can't wait to see her :)

On Thursday me and mum set off to the British Transplant Games as planned. We settled into our accommodation in the afternoon (at the University of Warwick) and found our tea before setting off on the bus to the Opening Ceremony in the centre of Coventry. The Opening Ceremony was good, if a little disorganised! It was great to meet up with some friends from the Transplant community (especially Cat who runs Transplant Kids and Sarah, mum to Wills), meet some new people and see my physios and dietician outside of Hospital B. I felt quite tired after that, so headed back to the accommodation rather than attending a transition meeting like I'd originally planned. The next day (Friday) I woke up exhausted, so withdrew from my 10 pin bowling event and spent the day resting. However that evening me and mum discovered Warick Arts Centre on the university campus and found out that they had a little cinema there. So we saw a fantastic film called 'The Class'. On Saturday I was exhausted again, so me and mum packed up and came home. I was disappointed that I couldn't participate in my event or stay til the end of the games and I'm very frustrated with my exhaustion getting in the way of everything. However my appointment with the M.E. clinic is fast approaching (August 11th), so hopefully I'll be able to get some help there. Have just heard from Cat at the games - Hospital B won the best liver team and the best children's team (for the 14th year in a row), so congratulations to everyone who was involved :D

When we got home yesterday I just spent the rest of the day relaxing. While I was away I recorded Mika at the iTunes festival and another gig featuring Little Boots and the Pet Shop Boys, so I enjoyed watching those yesterday. I also watched the final episode of Psychoville, which was good but left lots of unanswered questions, suggesting there will be a second series. And I saw Mika's new video (for We Are Golden) on the Internet. If you're interested in watching it then click here, click on 'Enter' and then when the intro video has finished click on the bit about a Mika exclusive at the top. Let me know what you think.

This morning I felt ok, so went out to browse round our local carboot sale with my parents. I bought 7 DVDs for just £8 - bargain! Then we picked my Nan up and brought her back to our house for the afternoon. It was lovely to see her, but I felt exhausted again :( So I spent some of the afternoon just relaxing in my room and some with the rest of my family. I showed my Nan my photos from last Saturday and we all watched a film called 'Little Miss Sunshine' together. I'd highly recommend it if you've not seen it, as it's a fantastic film!

Before my transplant, when I used to be on TPN, I was under Hospital G. I used to stay in there quite often, so made a couple of close friends over the years - C and I. However since my transplant I've almost lost touch with them apart from the occassional email to I. A few weeks ago my mum received a phone call from C's mum, who was quite worried because it looked like C might need a small bowel transplant. She knew we'd been through it, so had lots of questions for mum. C isn't dangerously ill as I was before my transplant, but her quality of life at the moment on TPN is poor and a transplant could give her a better quality of life. I emailed C saying she could speak to me anytime, but she's not been in touch since, so I don't know if she will be or not. Hopefully her mum will keep my mum updated though. Then when I arrived back home from the British Transplant Games yesterday, I found an email on Facebook from I. She asked if she could have her home phone number because a transplant had been mentioned to her and her mum wanted to speak to my parents. So last night I's mum spoke to my dad on the phone. Like C, I has been given the option of whether she'd like a transplant or not as it could improve her quality of life. I is going to phone me soon to chat to me about my experience. With me it was a matter of life or death, I had no choice in accepting a transplant as I knew without it I would die. It must be so much harder for C and I, being given the choice. For C and I, horses are their life, but post transplant pets are a big risk to your health, so that will just make the decision harder for them both. All I can do is tell them about my experience and help them to decide whether a transplant would be the best option for them or not.

One of the children I've met at hospital B is an inspirational little girl, K. She had a small bowel and liver transplant at 11 months old and is now 5. She's had a rough time since Christmas and has been in and out of hospital. However she has a fantastic sense of humour and is almost always cheerful and smiling. Last week I heard from her mum that K is going to need a second transplant. After I heard this news I contacted Live Life Then Give Life about their Robyn's Rainbows project. This project sends out balloons to members of the transplant community who are having a tough time. So I emailed them and asked them to send a balloon to K to cheer her up :) I know K is a fighter and she's been a real inspiration to me, so I hope she soon gets her transplant so she can begin to live her life again.