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?
Hi, know what you mean there. I was only diagnosed with HE after I blacked out while driving, luckily no injuries to anyone or damage. I am over 3yrs PT and have always mentioned at appointments how confused, distant etc I feel as well as extremely forgetful. I forget what I am saying halfway through a sentence, can’t remember names or some words. I have to be so careful crossing roads as I can look not see a car next second it is there like there is a few seconds delay in what my eyes see and till it gets to my brain. I have had all sorts of tests and scans on my brain even tests for dementia but all that comes back as it’s all traumatic family happenings and changes for me pre and post TP.
How frustrating for you. I know exactly what you mean though. Take for example even writing this post. I had to proof read it about eight times. It's not due to typing mistakes or bad spelling. It's the way my brain sees the words when it reads the, If I was to type a few words like, "Big Brown Fox". I would find I actually type "The Browned Foxes". My brain still sees it as being, "Big Brown Fox". It's only if I walk away and then come back do I see the error. I hate it.
Yes it’s very frustrating but where I could even talk the way HE affected me people are saying to me how my speech is getting less slurred as time goes PT. it all shows it’s all a slow and king recover from where we were but progress
My consultant told me it causes mild brain damage, forgetfulness, memory problems etc there is nothing they can do I tend to do brain training puzzles every little helps x
Hi jojo - I do brain puzzles like you do. I use an app called Elevate which I like - but you have to pay for it 👎🏻👎🏻👎🏻.
Like Richard and chuggers I read text as I expect to have written it and not as it actually is! It took me 40 mins last night to write a 15 min max email - checking, double checking, reading back word by word etc! I also couldn’t believe when I finished it had taken me soooo long. Hmmm.
Oh Phoenix, flipping heck it has taken me 2 days to figure out that that is a mixed up davianne!! What am I like. ☹️. No wonder I don’t touch cryptic crosswords. Mind you these days I won’t even look at a normal crossword. And as for reading a book, that’s an impossibility ☹️☹️.
Spike Milligan was always my hero. When I used to work in North London, my old boss used to live in High Barnet, in the same street as Spike. He said he was just as mad there as he was on the telly. To visit Spike's grave is on my bucket list. Even in death he had the last laugh.
Written on his gravestone it reads, “I told you I was ill.”
Oh Richard, I remember his dying quote🤣. I have listened to all his audio books, several times, and they still bring tears of laughter to my eyes. My children were all brought up on his books and his poems "silly verse for kids", they love him now too.
Umm just a little jojo just a little 😁👍 thank you 💊 💊 but where would we be without them.....
Hi Richard,
All I have read suggests that the level of HE one has pre-transplant remains after a transplant because the toxins appear to cause permanent brain damage to some level.
I constantly am worrying about my husband, which drives him a bit nuts when he notices, plus I nag about his BM's - how many is he having, is he having any. Plus, in our case, we are now just into our 70's and thus into the really "Golden Year" LOL.
We just returned from a car trip from Minnesota to Arizona and back and he drove [he loves driving]. Coming back we went thru Colorado and its lovely [terrifying for me] mountain roads.
Discussing this with his liver doctor it seems that HE is somewhat like depression - the determination of how bad it is is based on self-diagnosis. Not, in my opinion, a great way to do things.
But we all go on as best we can and hope and pray that things go well for us all.
The worst of the toxins produced in the gut when breaking down food is ammonia. This normally is made harmless by the liver and then passed onto the kidneys. Because of liver damage, the ammonia can build up and leak out into the blood system. It then travels up to the brain and causes serious damage. Some of this damage can be both temporary or permanent. This permanent condition is then called Encephalopathy.
Richard pretty much answered about the ammonia as the main toxin - a site I was on [Merk, I think] said they still aren't sure what things the liver gets rid of has an effect on the brain, but ammonia is one.
It is a learning experience for sure.
Thank you and best wishes to you,
Mary
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Wow Mary we were told in no uncertain terms at my TP Assessment at the Hospital HE = NO Driving. I was without a licence for near on a year ☹️. Hope your husband is better than I was, sounds like it 👍?
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Hi Milo,
I think part of it may be we live in the US. His most extreme HE was while he was in the hospital with his liver failure in Nov of 2015.
He hasn't really shown many signs of significant HE and I pay very close attention while we are driving. I did all the driving for about a year after he got out of the hospital - partly because he broke his foot twice during that summer. Once he started driving again, I paid attention to how he did and had our sons also pay attention so if there were any issues we could handle it right away. We have been very lucky.
Best wishes,
Mary
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Aww that’s great then Mary. But not great about breaking his foot of course - poor chap. Things always happen in threes?
Hope he is getting better now and you can relax a bit more 😁? He’s had his three now 👍
Miles
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Hi Miles,
He is doing pretty well now.
He will, now and again, complain that the hand doctor didn't straighten his fingers while they were healing, but the doctor said that too often trying to get fingers and hands to look good they ended up losing usage. He has a bad elbow from an accident while in the Navy and the doctors who saw him for that, a few decades ago, told him the same thing - if we fix your elbow so you can straighten it you might lose the ability to move it side to side [ I know that doesn't make sense LOL ].
Hope all is well with you & yours,
Mary
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Hi Mary
Your husband has sure been through some trials and tribulations so it’s good to hear he is doing “pretty well” now. That phrase always makes me smile because when I say I’m OK to similar questions it really means I’m not but I have been told to be “glass half full” 😁 and not to complain too much! So I hope he is indeed is in an improving state👍.
Re repairs:- I had the same response after an op to repair my finger after both tendons had broken (“eaten away” they said) due to an infection. Permanently bent (i.e. can’t straighten) after an operation which joined up only one of the tendons! But it is brilliant for still being able to grip things between forefinger and thumb 😁😁👍👍. So I’m “pretty good” in that respect 😁.
All the best to you both
Miles
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Hi Miles,
The "pretty well" is more based on me not wanting to jinx things
Right now he is giving me a history lesson on Pearl Harbor - we are watching the 2001 movie Pearl Harbor on tv and he said they got it wrong - the Japanese bombed the air strip before the ships LOL He doesn't think they ?? had machine guns either.
And thus goes our exciting Sunday afternoon.
Wishing you & yours the best, too,
Mary
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Mary
Love your SOH. Hehe. Well I expect he knows what he’s talking about. 👍. I hate to say but I’m the same when I watch films involving planes lol.
I know what you mean about jinxing things - it’s often best to say as little as possible in certain circumstances!!
All the best and please keep the humour up, love it!
Miles
• in reply to
Thanks, Miles.
Another war movie tonite - missed most of it.
Our Memorial Day week end is coming up, so there will be more I'm sure, with commentary.
Now don't be like Richard and give me spoilers [joke].
The sense of humor comes with varying spells of and levels of sarcasm, just to warn you.
Best,
Mary
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I can cope with sarcasm. In fact I could give you a sarcasm contest if you want 😁.
Only joking!!
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I hate to spoil the end, but the Japanese lost. Or rather came second.
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Oh no, Richard, you just spoiled the ending!
Does that mean the Germans/Nazis came in third?
It is 10:45 pm our time now and another war movie - something more current - a Vietnam one [ I was upstairs watching reruns of Criminal Minds & The Listener, and checking my eyelids for holes - none yet]. Husband just mentions a line of guns and why that is best LOL.
There will be a lot of war movies since our Memorial Day week end is coming up.
Mary
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Lol lol lol Mary! Life is just one great party for you then with all those war films 😁.
You know you might start a debate now about who didn’t win the war and those that say the West didn’t actually win and you know what about the Holocaust. But I’m not saying anything more. Sorry! Wash my mouth out. I blame yet another terrible night’s sleep. Sleep seems to be fine when I’m watching tv with my wife during her favourite programmes but not alright when in bed - funny that 👎🏻 Or not.
Miles
For all of you that commented I must say that I have never noticed anything off in your writing. You all consistantly write very eloquently and with an incredible ability for detail and narration. So whatever you are all doing it is working well!
It's generally called proof reading, again and again. Sometimes I can be half way through a sentence and can't think of the word that I want to write. I know what the word means but it can take a while to think of the actual word, I've even had to google a word at times!
I think what write is good greatalf I notice never anything honest to be...
I really understand what you all seem to be going through, often words and names go straight out of my head, even mid sentence.
My spelling was never great but is much worse now, and proof reading a must!
I find things I have just put down and left without thinking.
While overall I am much more mentally alive, I still have to keep on trying hard to do things and make sure I remember where I put things, the hours I have spent looking for stuff!
I thought it may be my age, now nearly 66.
I think I might try some brain exercises.
David
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I can never remember whereI have put my reading glasses! I got fed up with losing quite expensive ones so bought five cheapo ones from Amazon two weeks ago. Despite not taking them out of the house I have already lost two pairs. That’s ridiculous some might say 😁 Yes-it is but I can’t find them 😁😁
Hi Poolim. I get so fed up of losing reading glasses that I will only buy cheap ones now. Also wife, who has a very similar prescription asks "Can I borrow your glasses for a minute?" Now that's a laugh! The words 'borrow' and 'minute', I'm lucky if I ever see them again!
I “borrowed” wife’s iPad a week after I bought it her for her Birthday. Unfortunately when I came to return two years later it wasn’t quite as good as when I borrowed it after I inadvertently washed it in the bath 😐...
if you can you let me know, as I have a couple I have lost as well mine might be in the same place !
• in reply to
I am sure they will be david, but I am at a loss where to look and we only live an old cowshed which is pretty small 😁😁
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