Medical history part 2 (liver disease)

In summer 2005 I was in the school playground as the fire alarm had gone off, and some boys in my class started teasing me for being 'green'. I didn't think much of it at the time. In November I'd been out with my family to celebrate bonfire night and just after we got home I had a nosebleed. I'd always suffered from nosebleeds, but this one was different. It was really heavy and wouldn't stop. I ended up in hospital that night. That winter I had many more profuse nosebleeds, began to look jaundiced and became very lethargic. In January 2006 I was so lethargic I stopped going to school. I had home tutoring when I felt well enough.

I was admitted to hospital G for tests as it had been long suspected I had gall stones (a common side effect of TPN). However the tests showed that my jaundice and lethargy weren't caused by gall stones, but were more likely to be related to my liver. I had a liver biopsy and was then referred to hospital K (a liver specialist) for more tests to find out what the problem was with my liver and why. Tests there found that my liver was very damaged, but the tests for various liver diseases all came back negative. So it was concluded that I had TPN related liver disease. TPN often causes liver disease, but it usually occurs after someone has been on TPN for a year or two (so mostly in babies in toddlers), so everyone was very surprised that TPN had suddenly caused my liver to fail after 14/15 years on TPN.

From there I was referred to hospital B, who are the specialist hospital in the UK for liver and small bowel transplants in children. There I was told that my liver was damaged beyond repair and so it looked like I needed a transplant. I was admitted for a two week transplant assessment in September 2006 where it was found I would be suitable for a transplant, and in fact it would be my only chance. The transplant they suggested was liver (because my liver was damaged), small bowel (so I would be able to eat or be enterally fed and could come off TPN, meaning the same TPN liver disease wouldn't occur again) and pancreas (because it's part of the transplant package!). When I was in hospital B my 16th birthday was fast approaching and I had to be under 16 to be put on their transplant list. There is an adult small bowel transplant unit in the UK (hospital A), but the children's hospitals got priority on the organs, so my chances of receiving a transplant in time would be much better at hospital B. I was put on the transplant list at hospital B the day before my 16th birthday. After my transplant I discovered that if I'd been listed under hospital A (the adult services) I wouldn't have received a transplant in time.

I went home to wait for the phone call. I was very ill (lethargic, jaundiced and still suffering from profuse nosebleeds) so we were all hoping the call soon came. We had our bags packed ready and for a while every time the phone rang we jumped. After I'd been on the transplant list for about seven and a half weeks, I returned to hospital B for an outpatient appointment. The doctors were worried about my health and said soon they'd have to consider admitting me as an inpatient. They also explained that there was currently a national shortage of donors, so I could be waiting for a while longer.