Medical history part 3 (transplant)

We left the clinic prepared for a long wait, but just a couple of days later I received the call. It was a Saturday evening and I'd gone to bed early because I was so tired, but my parents and Alfie were still up. Chris was called and he came home to look after Alf while we were away. Because we'd already got our bags packed we were soon ready to go. Before we left my mum put a red sheet of card up in her window. This was a prearranged code to let anyone passing know that I'd been called. I was terrified as we set off to drive to the hospital.

I can't remember much of the car journey or my arrival at the hospital, but I clearly remember going down to theatre at about 8am on the morning of Sunday 19th November. The anaesthetist asked if I'd like some music playing, so I went off to sleep to 'Snow' by the Red Hot Chili Peppers.

My memories are patchy during the period I spent in hospital (due to Morphine and lots of other medications I was on, as well as the fact I was very ill for a while) but I can remember some things and my mum kept a diary for me. I was in theatre for 12 hours and then in ICU for 5 days. I was in hospital for 11 weeks in total, and had various complications meaning I had to return to theatre more than 10 times. I had pancreatitis, an infection in my wound, kinks in my new bowel, adhesions... After a small bowel transplant the aim is to reduce the TPN feeds and build up the replacement (NG) enteral feeds, until the TPN can be stopped. I had trouble straight away tolerating the enteral feeds into my stomach, so from TPN I was weaned to NJ (naso jejunal) feeds and then to NG (naso gastric) feeds, which took a while. I had my first night off TPN on January 1st 2007! There were also complications with my fluid balance resulting in me being overloaded with fluid and I had horrible pressure sores from being in bed for so long. And my sleep pattern was messed up, so for many weeks I was having just an hour or two of sleep in 24 hours, making everything seem a lot worse.

Eventually things started going more smoothly and there was a discharge meeting held to arrange getting me home. Before I left hospital I had a final operation to remove my central line, as I was off TPN so didn't need it any more, and it would be an infection risk if it was left in. By this point I'd had loads of operations, but for some reason this time I reacted to the anaesthetic and for a few days I had an awful headache. This was a concern as meningitis was suspected, but the lumbar puncture and all the bloods came back clear, so a reaction to the anaesthetic was assumed. Eventually I was discharged after 11 weeks!

Although I've mentioned many difficulties surrounding my transplant, I did have some good times while in hospital too. I remember one day how I discovered that if a syringe was filled with air and then a cap was attached to the end, you could make the cap shoot through the air by pushing the syringe plunger. I tried this out on the nurses and soon I had 3 nurses creeping under my cubicle window and firing syringe caps at me round the door. I was firing back. That was great fun :D I also met some great people during my stay.

The first few weeks after my transplant I'd been in isolation, having to stay in a cubicle all the time, then I was allowed around the ward and eventually I escaped the hospital and went into the city. However due to the high immuno-suppressant drugs I was on (to stop my body rejecting my new organs), I had to avoid crowds for 6 months. There were also all the new medications to get used to (when I came home I was taking 14 different medications and over 80 tablets a day), my enteral feed had to be specially made up every night and I had an illeostomy. An illeostomy was formed when I had a transplant so my new bowel could be carefully monitored, but I just found it frustrating.

One week after discharge I returned to hospital B for an outpatient appointment. I had bloods taken and it was found my liver function tests (LFTs) had risen, so I was readmitted for observation. I had known this was a possibility, so had packed an overnight bag to take to the clinic just in case, but had actually left it at home. So I was totally unprepared. My dad stayed in with me and my mum returned home. She planned to come back the next day with my stuff, but the next day we woke up to very heavy snow (yes, in England in February!), so my mum couldn't get back. But a lovely parent on the ward lent me some night clothes etc, and we bought the essentials. My LFTs were monitored, but it didn't look like I had rejection, so a week later I returned home for good!

For a while after my transplant I had to return for outpatient appointments and inpatient stays (for endoscopies) regularly to monitor me for signs of rejection. I was told that 90% of patients have some degree of reaction in the first 6 months and 98% in the first two years post transplant. But luckily, I've had no rejection at all (and at the time of writing I'm 2 years and 2 months post transplant).