As part of the new, Europe wide report on HE we are looking for up-to-date case studies from liver patients or their families/carers willing to discuss their experiences of living with HE.
Whether you would be willing to talk about your story anonymously for a written case-study or would be happy giving a talk at the European convention in Brussels (for which all expenses would be paid) you would be making a really valuable contribution to this important piece of industry guidance and could help to improve the experience of hundreds of thousands of people throughout Europe.
If you would be interested in contributing then please message me on this forum and I will be in touch to discuss further what happens next.
Thank you,
Holly Dawson
Community Champion - British Liver Trust
Written by
BLTHollyDawson
Volunteer
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I don't know whether you mean suffering at present with HE, or in the past, pre transplant.
But I might be willing to share my experience of this with my husband, prior to transplant.
Incidentally they did find metal deposits in his brain which caused HE with Parkinsonism. We were told that there was a chance that it might not be completely cured. We don't think it has, as he still has neurological symptoms which we are going back to Neurology for this week.
I'd be willing to share experiences about my husband. We are English but live in Spain, if that's not a problem.
Hello - I would be willing to share our 'many' experiences with HE pre-transplant - can't say much about post-transplant as it is still being investigated 😘😘😘😘😘 it will be from a wife/carers view tho as hubby doesn't remember any of it xx
This is my interest in liver problems, I had PBC with severe H.E. - Have many stories (some rather odd) and I am keen to share - my HE removed my inhibitions, this was often the cause of getting close to trouble, but also alowed me to share what I was feeling. I posted on here asking if people wanted to share HE stories or concerns, Robert (admin) asked me not to, and I am not having a go in any way at Robert here, but I suspect the mental health issue is getting in the way, and it is almost a taboo subject, I think this is extremley wrong, and some sufferers would (might) welcome a more open forum - so I am game to offer my experiences, memory is a partial problem, but my aide memoir and wife Angie would also be willing to discuss etc. (time allowing) We run a 5* Gold B&B some Faulty Tower moments amongst others!
So glad this has finally come up in discussion. I always felt alone in this.
My husband still has neurological symptoms. Just wondered if you have.
Yes Mike lost some inhibitions too and I don't think they have fully returned to normal. Seeing Neurologist this week.
He was diagnosed with metal deposits in his brain causing parkinsonism and was told may never completely recover. How about you. I expect your wife, like me, remembers more than you do.
Wife (Angie) does recall better than I, but once prompted I can remember it all!
I do still have mild issues, the severity of which vary day to day.
One thing I have found is once a mistake is made, I invariably either get confused and fail to correct or get agitated as I attempt to correct, and mistakes can and do happen!
I contacted Holly and am expecting to get involved in the survey, I agree, it seems that since this area is like a mental issue, even the moderator Robert is not comfortable with it! Leaving us who suffer all alone! This is scary since as it is a mental problem, even if only temporary for many, by definition it becomes scarey, am I going mad is a scarey question in itself!
The GP and Local hospital were very ignorant of HE making the isolation even more extreme, and I feel quite strongly about the subject and look forward to working with Holly to promote awareness of Hepatic Encephalopathy !
The Freeman transplant people were well aware of HE but they did not offer much support, perhaps because I did not call for it, I muddled along in my own little world, inhibition free, making an ar5e of myself, embarrassing my family, who were very understanding indeed, I can imagine some people are / were unable to take it so eaisly for a number of reasons. P.M. me if you feel the need!
I just wanted to say a big thank you for the great response to our call for case studies. We have now had sufficient volunteers for this particular ELPA report regarding Hepatic Encephalopathy who will all be interviewed this week for possible inclusion in the report . We are so grateful for the generosity and courage of those taking part and I hope that this will be a really beneficial piece of work and such a positive use of your difficult experiences.
For those who haven't been included on this occasion but would still like to share their stories you can still do so on the "Your Stories" section on the BLT website (britishlivertrust.org.uk/yo... where they will be displayed for the benefit of visitors to the site and, should you wish, we may also contact you in future if similar opportunities arise.
I also wanted to address the comment written above by PCBnPBC regarding the comments by an "admin" called Robert requesting that you should not share stories about HE on this forum. I have now checked with Head Office who confirmed that we have never had an employee at BLT named Robert and so I am not sure who made these comments or why they claimed to be an admin of the site when they were not. If you can find the site ID of the commenter and original comments then I will investigate the matter further.
I also want to clarify that the free expression of your feelings, experiences and thoughts is the fundamental purpose of this forum and as long as posts do not break the HealthUnlocked Community Guidelines, (which you can access here if you are unsure as to their content - support.healthunlocked.com/... and are not agressive, abusive or contrary to the supportive and positive atmosphere of the community, then we would never wish to censor content however odd, uncomfortable or upsetting it may be. As the reality of liver disease (and especially HE) can often be all three of these it is especially important that these parts of the experience can be shared with others who understand.
I hope that has cleared it up and I will endeavour to find out what was going on. Thank you for all being such positive contibutors to this community and for taking the time to get involved.
Hi to all of you out there still suffering post transplant with HE,
type symptoms.
Mike saw the movement disorder specialist at kings today.
He was excellent. Says that Mike does still have what he calls a mild tremor.
We were with him for 3/4 of an hour. Very thorough tests. He is booking an mri for his head which may lead on to a ct, depending on the results. Neuropsychological tests and starting him back on Sinemet which he was taking pre transplant.
Mike was actually diagnosed with alpha 1 antitrypsin deficiency which led to cirrhosis.
But the pathologist did say when he did the biopsy that there might be another problem which also could cause cirrhosis.
The consultant today mentioned something else, which again is a genetic fault, to do with deposition of manganese in the brain, which causes these symptoms. Mike was told he had metal deposits in his basil ganglia way back .it is related to something known as SLC30A10. So he is checking to see if this could be part of his problem.it causes exactly the same problems as alpha 1, I. E cirrhosis , distonia and parkinsonism.
I have looked it up on the Internet and it is written about in a publication dated 2012.
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