Those of us who have had experience of Hepatic Encephalopathy will know from the symptoms and of the treatments what is involved. Visit to the GP, describe your symptoms, get prescribed lactulose, or in some cases Rifaxamin and Lactulose, (I was only given Lactulose).
Is there anyone like me still suffering with Encephalopathy post-transplant? There appears to be very little or no testing carried out at the time of first reportage into the severity of the condition, and to whether the condition is temporary of permanent.
While there are tests available, i.e. blood tests, a spinal fluid examination, imaging studies, such as MRI or CT scans, electroencephalograms, none of these have every been offered or even requested.
I’m beginning to think that there is a breakdown problem here. Hepatic Encephalopathy, as we all know is a liver-related condition and would come under the control of a Herpetologist or gastroenterologist. However, Encephalopathy is a neurological condition. Because the degree of damage within the brain is never measured or investigated, the damage can well become permanent, as I suspect happened in my case.
Almost three years post-transplant I still suffer with bouts of Encephalopathy, with all the associated symptoms. I also fear that it may also bring about early Alzheimer's as brain fog is becoming more increasingly more noticeable. Especially during public speaking, (which is most embarrassing).
Are there any other people out there who have experienced similar conditions post-transplant?