Encephalopathy

This year aside from all the post surgery complications I have managed to develop more problems, the main one being encephalopathy. I've never really suffered from enceph pre-transplant which is why the doctors are puzzled as to why I all of a sudden it is happening and very often despite my LFT's all being within normal range apart from my ammonia levels which on occasion is raised. The first episode I had was in June, I didn't know what was happening to me because I suddenly became very shaky and couldn't control my limbs or hold anything for a few days. I then became very confused and unconscious. I was taken to my local hospital where I was diagnosed with grade 3 hepatic encephalopathy and the doctors said I got there just in time, any longer and I may have slipped into a coma. I was treated with phosphate enemas and antibiotics and made a rapid recovery. However, over the next few months i kept having episodes and was in hospital every month, sometimes twice in a month. Mum had to call the ambulance almost every time and they would always bring me to my local hospital which is also a Liver transplant centre. However, due to my complicated medical history Kings didn't really want me to be treated anywhere else and the Liver team at my local hospital didn't feel comfortable treating me neither when they read my notes and always tried to get me transferred to Kings and kept telling me to go straight to Kings next time. I tried to explain that the ambulance will not take me all the way the Kings as they have a duty of care to bring people to their nearest hospital and mum doesn't drive so there is no way i could get to Kings A&E. My total hospital admissions this year must be at least 10 and most of them being for encephalopathy and the rest for pain.

My surgeons were getting concerned that the encephalopathy is affecting my quality of life and so  I was referred to the hepatologist consultant who specialises in that area and she so happens to be doing a trial on a new drug which seems to work for some patients, so she decided i would be a perfect candidate to try the drug. Since starting the new drug I haven't had another episode so fortunately for me it seems to be working. As the drug is still be trialed it is not yet licensed so i can't get it from my GP, it's only that one doctor at Kings who can prescribe it, so she has given me 4four months worth and will be reviewed to see if I should continue with it for the long term. I hate the fact that it's another medication to take but if it keeps me out of hospital I guess it's a small price to pay.