I seek people who are prepared to share anecdotes of some of their worst moments of Encephalopathy.
I know this will be difficult to achieve, (sharing extreme H.E. anecdotes) as some stories may well be as bizarre and with that "embarrassing" as are some of mine! one or two of which I will elaborate on today, more are available if people interested. My intention is to share so others can see how weird H.E. can get when severe, and to help them in feeling they should not be ashamed, it was for me a temporary mental health issue of extreme magnitude.
I had about 2 years of Chronic Hepatic Encephalopathy Diagnosed by Freeman Transplant Unit (H.E. from now on) before my liver transplant in Nov 2014 (Thankyou to my donor, his family and the Freeman Newcastle team and my family and friend's support)
At first my wife thought I was becoming Bi-polar, then she thought I might be suffering early onset Dementia, then I am diagnosed with Liver failure (PBC) My wife asked our Dr. might I have Minimal E. (Googled info) he said no, I was struggling to accept my PBC diagnosis and then the fun began :
I realised that I had a problem when I chucked the Kenwood mixer, wife's brand new lightweight coat and 1 litre of youghurt into the bin (the mixer and I survived) I stood back in a weird sort of rage, and considered why I had just done that! I could not explain it to myself....apparantly I was mad because there was a small smudge of youghurt on the work surface.
i was put on Citalopram (anti depression) after 9 months of waiting to see a consultant (Marvelous local hospital) by this time I was in severe need of a transplant and on first 3 minutes with consultant we decided to send me to Freeman, Newcastle.
Freeman suggested I offer up my driving license (H.E.) or they would offer it for me! and they put me on Rifaximin. This helped but did not eradicate the Chronic Episodes of H.E. which came back on regular occasions. I used to be an electronics engineer, and suddenly finding myself unable to read an 6 digit phone number and then type it into computer, unable to remember very much at all, unable to hold conversations, remember peoples names, etc etc. were day to day experiences which shocked and frustrated me! I once slapped my wife's leg (quite hard) in frustration, that was really not my style at all, she thankfully understood, she has been a saint, I do so love my wife (and all my family and friends) who has had to put up with so much.
So a last anecdote : My daughters ROA (record of achievment) is a school tradition, the pupils dress up in suits and gowns, the parents go rather tidely dressed, my daughter had the honour of reading the brief on everyone in her class on the stage, it was to be a joyous occasion, I crept out of the garden, midsummer, hot, (perfect conditions for H.E.) did not change, arrived in my gardening gear, wife says I had knee pads on, everyone else in suits or jackets etc. whilst waiting for the start I (apparantly) start to make comments of those around us which were inappropriate, (have you seen than woman over there she is soooo thin sort of comments, but loud enough for neighbours near us to hear, then I started on in loud voice I NEED A DRINK! where can I get a drink? I was asking in an inappropriatley loud voice, people near us started to look embarrassed for my wife, I left to find a SOFT DRINK for my genuine thirst (dehydrated is good for H.E. effects!) my daughter was somewhat embarrassed at my behaviour, (under statment) and they got me into car and away as soon as they could.
I often experienced inappropriate behaviour (more stories) I was often irratable, confused, forgetful, unable to relate to others, but I did not realise this at the time. I also slept 18 hours a day on occasions.
Is there anyone else out there who have similar stories? Prepared to share some of them?
If yes, but you don't want to share them so openly, but will more privatley , either P.M. me or email firstname.lastname@example.org
The other reason for wanting to hear anecdotes:
I am being prosecuted for using bad language at my local A&E in September 2014 (6 weeks before transplant) I had fallen 10 foot in garden (balance is another HE issue) I went via dentist who pulled bone out of my bare gums following dental clearance 2 weeks ago (PBC issue of calcium) and after waiting 3 (Three) hours in A&E lay on the floor in pain and need for sleep, they kicked me off floor, first time I simply sat back on chair, then in so much pain 15 minuites later took to the floor again, they REdemanded I sit back on chair (up to this point 3 1/2 hours of waiting on a bolt upright chair, I, my daughter and a stranger had asked for a bed / trolley 3 times) I had not had one word along the lines why are you here? why are you on the floor? how do you feel? etc !!! I informed them I could not get back onto chair, they threatened and did call security, I then used a few bad words!! I walked out, still concerned my varicees (or whatever) could have been damaged in 10 foot fall) but not having had anything to drink or eat all day, angered by the outrageous treatment, their refusal to speak with my wife on my phone, I walked out and fell asleeep on the pavement outside A&E
I put in a "concern" this was ignored, and in a counter argument, they chose to prosecute me under section 5 public disorder! The support I have from others is mind blowing, a barrister (QC) on hearing my plight has offered to represent me F.O.C. and many others in positions of some importance are supporting me, the element the hospital are wriggling on is nurse says I appeared intoxicated! (but did not smell of intoxicants) well, actually so what? but I was not intoxicated, it was H.E. and CPS are choosing NOT to use in court the statment from the hospitals consultant who describes how H.E. can affect someone, as it is a "bit wooley" and does not help their case ....I am looking for other examples of this quite rare condition, where sufferers can behave in unusual ways!!