.jpg) |
| Coloured pencil drawing done at Kings, Copyright Joan Lee |
I didn’t know I had autoimmune hepatitis (AIH) until I was admitted to Kings College Hospital with jaundice and other symptoms of very advanced, irreversible liver damage (cirrhosis). I was at high risk of internal bleeding due to my blood not clotting and high pressure on my hepatic portal vein. This all came as a bolt from the blue, in my early 20s, not long after leaving university in the late 1980s. In hindsight, I reckon the AIH had been there for at least five years before the diagnosis. I still don’t know what triggered it – a virus, perhaps? As is often the case in the earlier stages of liver disease, the symptoms were vague and could be put down to other things: I blamed the tiredness and my frequently low moods and sense of hopelessness on the pressures of studying, despite doing well at school and college. There were some symptoms I'd put up with and could have / should have acted upon, such as teenage acne and weight gain refusing shift. I was on the books of a couple of specialists at my local hospital but, as they weren't liver specialists, it didn't occur to them that hepatitis / impaired liver function might be the root of these problems. In any case, I was too wrapped up in my studies and gaining my degree, to bother with doctors appointments. The jaundice crept up gradually, too gradually to notice. Particularly as I liked walking - out regularly with the university walking group - everyone mistook my sallow skin for a sun tan.
I was in hospital for five weeks pre-transplant, the first ten days of this at my local hospital, before being transferred to the specialist liver team at Kings. There, they diagnosed autoimmune hepatitis (then called chronic active hepatitis, now known as AIH). Apparently, my blood tests were strongly positive for the corresponding auto-antibody. They tried steroids (prednisolone) for a few weeks, but I when it was clear I wasn’t responding, I was frightened. One day the doctors looked visibly worried on the ward round. At some point they would have to break some difficult news: my only hope was a liver transplant. This would be a massive operation dependent on an organ donation. I hardly knew anything about transplants and thought it was still very experimental, with poor rate of survival. I was afraid, then, to talk to anyone or ask any questions, least of all doctors. One afternoon ward round, I hid in the utility room, not wanting to hear what they had to say round the bed. I buried my head in the sand, but knew I had to face it sometime. The registrar told me two days later, my mother at my bedside visiting. If anything she was more shocked than me. I'd already seen her overcome with worry when my brother was in hospital (for a something completely different) a year or two earlier. I was worried, then about something happening to her on her journey home. My first reaction was to turn away in panic but the doctor told me that, provided I got through the operation and the hospital monitored me carefully, I could lead a perfectly normal life. Indeed I'd get to visit the rivers the grown so fond of walking along during the summer.
Over the next week or so, I tried to think about the happy times I’d had during my childhood and at university, listening on my Walkman cassette player to the pop music I'd enjoyed on family holidays. I was thankful for the life I’d had up to then and quashed thoughts of "why me?" with "There's always someone worse off than you". Usually, I did not have to look far. There were plenty of examples in the news. I thought, too, of a child a year or two older than me at school, severely disabled and rumoured to have died. I'd already had ten years of life she hadn't had. As I’d done throughout my time in hospital up to then, I kept myself going by drawing.
The fact that I'm sat here now talking about it means I got my transplant - I'll speak about this in another chapter (The transplant and after).
