Finally got listed at 38, after 14 years with a Hemochromatosis/Iron Excess Induced Liver Cirrhosis.
I also have HE (covert/minimal) since from when I can remember however it doesn’t seem minimal, quite often I forget if Ive administered Insulin (T1 diabetic), have trouble calculating simple math and general mental clarity is all over the place.
I’m aware that these are common signs of HE whoever despite being chronically confused I know where I am and can articulate pretty well albeit only in short sentences.
One of my main concerns is that these symptoms will persist post transplant and that I won’t be able to return to a high functioning role in IT/Finance once I’ve fully recovered (fingers crossed).
Has anyone experienced these symptoms and can provide insight as to post transplant recovery and HE reversibility as there are many conflicting pubmeds in circulation?
Wishing you all a positive 2020 x
Tom
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tommyc
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In March 2016 at the age of 62, after a fairly short illness with alcohol related liver disease, I had my transplant. My main symptom was overt hepatic encephalopathy (HE) which, spread over 2015, resulted in approximately 80 nights in hospital.
Eventually, with a combination of Rifaximin and lactulose, this was quite well controlled. At my worst I was seeing things and became delusional with paranoid thinking. Simple tasks were impossible, my short term memory didn't work as it should and my grasp of facts became strange. When asked in A & E, ‘who is the Queen,’ with total conviction and without hesitation I replied, 'Margaret.' Nobody could convince me that I had got it wrong. They knew me well on the ward and together with my wife, they got me well enough for transplant.
Since then I have been very active in quite demanding voluntary work and completed an intensive university course combined with work placements. I now work in acute forensic psychiatry. This is despite having both state and NHS pensions, for the first time in my life I’m working because of want rather than need.
Also won two bronze medals playing table tennis at the British Transplant Games.
Hope this gives you an idea how life can be post liver transplant and I’m wishing you a short wait before you get your opportunity for a new life.
Hi my husband has alcoholic hepatitis and cirrhosis, but has been told legally he cant have a transplant as the damage caused by alcohol, seems to be a lot of people on here post transplant after alcohol related illness so can anyone tell me whether this is correct or not please ? Mand
Are you in the UK? If so you can have a TP after ARLD....provided you give up drinking six months (please correct me if I’m wrong on the duration someone) before being put forward for the Transplant Assessment and also show a commitment to abstain afterwards.....
Thank you, yes we are in the UK, he has been sober since diagnosis in September last year and so far so good, so guess we have a little way to go yet. His consultant said he wouldn't be able to have a transplant unless he was at deaths door! And was reasonably confident that things would improve given time. But he was taken back into hospital with breathing difficulties on Sunday due to fluid on the lung. Hoping that this will be drained along with his stomach today as its making him very sick and unable to eat 😪 x
Well unfortunately it does seem that you do have to be pretty darned ill and have little chance of getting better before you are considered for a TP. If your Consultant thinks that your husband has a chance of getting better then that is good news at least. Of course that doesn’t help you in the short term unfortunately 😕.
Just for info it was four years after I got diagnosed before I was considered for a TP Assessment. I know of others who have waited longer 😕. On the other hand when I was in the Hospital post TP this poor chap came in who was clearly very ill. He got a TP within four days completely bypassing the formal Assessment process. So it is very much, obviously, down to individual situations.
I hope your husband gets his breathing sorted out in the very short term.
Good luck Tommy! I have been diagnosed with mild HE, currently take lactulose and rifaximin. I have noticed that I don't have the attention span and vocabulary l used to. I am hoping to become a literacy volunteer and that it will help me to retain more. 😉🤞
Well surely it will be a comedy then, because when I am only supposed to be telling about something that's happened, everyone just laughs (although I do like to make fun of myself).
26 Months ago I had my Liver Transplant, and this time last year I returned to work full time in ICT (I had been absent for 3 years) I had some HE that was helped with medication before the transplant, and although I struggled after my transplant, my memory did get better, although not as sharp or quick as previously, all the old info was still there, and my colleagues now appreciate that when I give them an answer it thought through rather than off the cuff, as most of can quite often be guilty of.
I have just turned 50, so a decade or so older than yourself, so depending on the severity of your HE pre-transplant, and the length of time you were ill, you will hopefully be able to make a full return to work, but beware, it will be a hard slog, your body has been through the mill a couple of times, and you will still feel tired at times (often when you are at work, but a considerate employer should initially take that into account as you build up stamina.
For the time being, try not to worry too much about pre-transplant, you need all your strength and energy (or what little you have) to get you to that magic moment.
I had HE it drove my mum to despair I was having all sorts of hallucinations, there was a mouse with an elephants trunk sat on the window sill, water running down the walls it was scary. I also had to repeat my name and address until I got it right and said the hospital was my home for now. I was on Rifaxamin and lactulose neither did any good I just had a permanent ring round my a**e lol.
After transplant as others have stated about their issues with their memory slowly improving I am still a bit doolally ie I weigh the dogs food out and put his food in the window and give the dog the scales pooch not impressed at all.
Wishing you well on your journey and your wait for a new life isn't too long.
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