Encephalopathy with Liver issues. Looking for stories to share .......to help others and me!

[PCBnPBC]

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 [e-mail]

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!!

Charlie.

[PBCRobert Partner]

We have let this post stand for now but I would ask you to hold off for now- until I post here again- before answering.

We need to be sure who is asking for shared information ans what they intend to do with that information externally.

It is just a case of us doing due diligence.

I shall reply to this post asap.

I would be grateful if you could cooperate.

Yours,

Robert.

[PCBnPBC in reply to PBCRobert]

Robert,

In the first instance I am trying to share MY experiences of the effects of H.E. that I suffered.

My experience of Freeman (I have nothing but massive thanks and praise for the whole team there) is that although I have a letter )copy) to my GP stating I have "Chronic H.E." no one there had much (if any) of a conversation of what I actually experienced.

I have been contacted in last few days by Keisha (details at end of reply) who is running a project on H.E. and says she is finding almost impossible to find people prepared to discuss their H.E. experiences, in fact I am the ONLY ONE she has managed to find for the trial of 40 or so in UK (they had no problems in Germany or USA) which lead me to thinking how none of the medical input I had ever discussed was on subject of how HE impacted upon me, and my family (which really was exceedingly severe) I believe this is (if my experience of lack of discussion with the medics) is average might be considered as a subject we might all benefit from sharing together, my extreme (how extreme are my stories? does everyone experience this but none like to admit or share?, do some experience far more extreme than I?? what percentage of people have sturggled with HE? spouses can be put through hell, if they are not aware that it is HE the resulting problems might be extreme in themselves! how many spouses (ahev) have failed to stay with it? Doctors (GPs) tend to have ezceedingly (exceedingly) this knoledge, (I give up spell checking, I believe my cognative ability is still impaired 6 months post transplant, is that normal, I ask Healthy Unlocked) Consultants in my experience have not discussed H.E. with me, so that leaves who? Health Unlocked I thought!

I do see a problem with confidentiality, now you point it out, I perceived a problem with embarrasment at admitting moments of craziness, but also thought IF people willing to shere, then no harm done.

I am being prosecuted by my local A&E following the most bizarre 4 hours of waiting, having had a good fall, poor calcium (teeth extracted for transplant) high risk of broken bones, severe pain, varicees, swollen liver and spleen and the treatment offered was get off the floor, sit back in your chair and this after 4 hours. Not once did anyone (after I checked in) ask how I was, did I have pain, why I was there , they state in legal statment they thought I was intoxicated, but did not smell of intoxicants.

Do I want to share any HE stories with the court? hell yes! will or would I be able to? hell no! I might however get to repeat anecdotal stories, like this one : I met a man in Freeman, he suffered HE, one of his "moments" was to strip naked, take his car keys, (he too had no license) with intention of driving about his neighbourhood naked. I do not recall the mans name, we were sharing stories, and there is no harm in my mentioning this to you as I do not name him, if I were to hear stories from tthers, (others) and wanted to bring them up in court I would need to have listed them as part of my defense papers last week. So this is NOT my intent.

I feel HE is not given enough "publicity" it is of course not just PBCers, as I understand it any liver end stage (what ever the route) can cause HE (is it 20% suffer?) If alcoholic issues represent a high number of end stage liver, and if some of them still drink, the behaviour must be bizarre, perhaps causing non experts to be unable to differenciate? another reason for my desire to open up the subject.

Please come back to me.

Here is the survey project details (which I confess has retriggered my interest in opening the HE subject up. :

Hi Charlie,

It was a pleasure talking to you earlier. Thank you again for your time, sharing your experience and all the useful feedback you provided.

Please also see the pre task attached. I am just waiting to hear back from Sophie to finalise your session.

In the meantime , please see a brief overview of the study below:

“Our Hepatic encephalopathy research aims to explore HE though the eyes of the patient, and to identify a number of patient types. The objective is to create a better understanding of patients themselves, identifying key moments in their journey to bring a greater understanding of their experiences.

Keisha

Keisha Gayle / Project Manager

([phone] / [e-mail]

Field Scope International Ltd Fax: :[phone]

BioPark, Broadwater Road, Welwyn Garden City, Hertfordshire, AL7 3AX, United Kingdom

fieldscopeint.com

[cazer in reply to PCBnPBC]

Have not had severe problems that you describe but have had awful blank moments like forgetting my brother inlawws name for 2 weeks. Being unable to recall pin nos I have had for years!and strange moments where I just feel blank. I think consultant put it down to fatigue but I feel for getting what a tree trunk is called ...my closest description is ..the brown wrinkly stick that holds a tree up is just wierd its as if the word has just gone. So if that happens on a much larger scale it would cause havoc.!!!!

[PCBnPBC in reply to cazer]

Cazer, thanks for reply, havoc is right! it peaked rather than full time, but when it peaks it was a high peak! the rest of the time was that mugginess many describe, like forgetting names that you could not normally forget and pin numbers, my spelling was atrocious, (still is 6 months post TX) my handwriting looked like a pissed spider etc etc.

[gizocsi in reply to PBCRobert]

Dear Robert, I appreciate all Your work, but here and now I really don't understand You...

[gizocsi]

Thank You for sharing Your expieriences. It's TERRIBLE, that in health care there are people, who ignore the patients, Your "accident" and such a process needs publicity!

I love YOur openness, because this is the most unbearable side and effect of our dear PBC. I suffer so much of my white moments, unexplainable happenings, even short losses of memory, because people look at me not as if I were insane, but just BAD.

Be brave, I hope, You win!

[PCBnPBC]

My court case has just been dropped, (CPS gave up when they actually read the details!)

So now back to the hospital to "discuss" my official concern ! they (hospital) are abusive even after the event, I assure you there will be some publicity.