My transplant MOT, 13th - 15th Dec

On Sunday I headed to Hospital B with my dad. We had to be on the the transplant ward by midday, so left home at 10.30am. We tried to check into the hotel first, but were told that our room wouldn't be ready til about 2pm, so we headed to the ward. Me and dad put bets on how long it would take me to be seen - we arrived there at midday we both expected a 2 to 3 hour wait. But we were pleasantly surprised as I was seen really quickly :) I had bloods taken, but decided to just have a butterfly for that and have a cannula put in the following day, so I didn't have to sleep with a cannula that night. And I saw a registrar to sign the consent form for my endoscopy and colonoscopy the next day. While we were on the ward I caught up with my favourite nurse, J, who I'd not seen since I was last on the ward in July 2008! It was lovely to have a quick chat to her (she was very busy) and I found out she's now engaged! And I saw M and her parents. I saw them each day while we were in and M is very ill at the moment with rejection :(

Me and dad checked into the hotel about 2.30pm, but our family room wasn't ready, so we opted for a twin room that was ready instead. But when we got to the twin room it wasn't ready, so we moved rooms again and then could get settled. We had a lazy afternoon/evening in our room. I watched a very odd DVD called Paprika and listened to my iPod for a bit, but was then very disappointed to discover that the wireless Internet wasn't free, but cost £10 for 24 hours! What a rip-off! But dad volunteered to pay for me to access the Internet for 24 hours - I think he must have got fed up of me complaining that I was bored! :P So I spent the rest of the evening surfing the Internet and watching the X Factor final and the Xtra Factor :D I went to bed at about 11pm I think. I had a really disturbed night though, I woke up too many times to count.

On Mon morning I had to get up at 7am(!) and was on the medical day unit (MDU) for 8am. I was a bit nervous about being on there as I've only been on the MDU once or twice before and don't know it nearly as well as the transplant ward, but a lovely nurse from the transplant ward had moved to MDU in Sept so she was on me, it was lovely to see a familiar face :) I was told I'd be 4th on the theatre list as apparently the older you are the better you can cope with the starvation. I felt really sick and dizzy which was probably because I'd not been allowed to eat anything since Fri! I didn't feel up to doing much, but watched a Doctor Who episode on my iPod to pass some time. I ended up 3rd on the theatre list and went for my scopes about midday. I recovered quickly afterwards but had a sore throat for a couple of days from the endoscopy and felt light-headed for a few hours from the anaesthetic. I did have tummy ache that afternoon, but it went after a little while. I've had tummy ache again for the last few days, but I'm hoping that'll be better soon. I saw a registrar briefly after my scopes and he said everything looked normal :) I'm still waiting on the biospy results though.

At 3pm we were discharged from MDU and went back to our hotel room. I persuaded my dad to take me out to eat at a Japanese restaurant (Yo Sushi) that for my first meal since Fri. I love Japanese food, so that was great :D I ate loads (more than I'd usually eat) - even more than dad and that's saying something! Then we wandered round the shops for a bit before heading back to the hotel where we watched a bit of TV (An Island Parish and The Gadget Show) before going to bed at 9.30pm! And I slept much better that night than the previous night :)

On Tuesday morning I had breakfast in the hotel restaurant. My dad had a fry up, but I just had some toast, some mini croissants and a glass of milk. I was on MDU for 8.30am. I had a test called a Chromium EDTA test to test how well my kidneys were working because one of the immunosuppressants I take can damage my kidneys, so they need to be monitored. The test consisted of having some radioactive stuff put into my veins and then the levels of it in my blood were tested after 1, 2 and 3 hours. The Chromium test went ok, but would have been better if my cannulas had worked! I have rubbish veins in my arms, so only the ones in my hands are usable. I needed the Chromium put in on one hand and then the 3 sets of bloods taken from the other hand. The cannula I'd had put in for going to theatre the previous day was still in, but wouldn't bleed back! So they put the Chromium in that (it was icy cold though!). With some difficulty a doctor then put a cannula in my other hand (which doesn't have as good veins) and we eventually managed to get the blood back from that cannula, but not without difficulty - we eventually resorted to taking the extension part off and just letting it drip into the blood bottle each time! But we got there :)

While I was in radiology to receive the Chromium in my cannula, I bumped into my surgeons in the corridor. One of them did my transplant surgery and the other has done my subsequent surgery. So it was lovely to have a quick chat with them and let them see how well I'm doing :)

And between the hourly blood tests I watched some Wallace and Gromit episodes on my iPod and went back up to the transplant ward a couple of times to see more familiar nurses and to see M's mum again. Dad was very happy to see his favourite nurse (who he likes to flirt with) and even ended up on the floor drawing round one of her stockinged feet so mum can knit her some socks! :P

I didn't get to see my consultant on Tuesday like I'd expected, which I later discovered was because he is off sick, so I'll have to email him with all my questions - did the scopes show a reason for my tummy pains (which are better now I'm not eating rice, but not completely better)? When will I get the biospy results back? When will I get the results of my kidney test back? And can I have a tattoo?

My dietician is on annual leave so I saw a different one while I was in hospital instead, but that wasn't very helpful because she doesn't know me like my normal dietician does. So I emailed my normal dietician on Wed from home and asked about some alternative high calorie drinks (and whether I can try one I used to have again) because I'm not getting on with the Fortisip drinks very well. I also emailed her my weight which I took on Wed this week instead of Tue because I was still away on Tue. I was so surprised to find that I'd not lost any weight over the week, despite not eating for 3 days and missing 3 of my 4 high calorie drinks! :D I suspect my dietician will be happy for me to drop my overnight feeds to just 2 nights a week, but I'll stay with 3 nights a week til I hear from her :)

We left the hospital at 1.15pm and got home just before 3pm on Tue. It was lovely to get home but I felt very rough on Tue aft which I suspect was probably due to a mixture of things including going without food for so long, having a GA the previous day and just being in hospital. My throat was also sore from the endoscopy and one of my hands was very bruised from one of my misbehaving cannulas! I felt better in myself on Wed, but have been very tired since getting home, which is why this update is a bit late, sorry.

I heard from Hospital B on Wed. My LFTs (liver function tests) are a little bit higher than normal (not too raised, but just out of the normal bracket), so I need my bloods repeated again at our local hospital on Mon - my poor veins! I'm a bit nervous because I don't think my LFTs have been high since my transplant before and it can be an indication of rejection or infection. But I'm wondering if it might be related to me not having eaten anything for a while when the bloods were taken or it might just be one of those things. Fingers crossed they'll be better on Mon.