Hepatic Encephalopathy?????: As I may... - British Liver Trust

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Hepatic Encephalopathy?????

Meteocal1
Meteocal1

As I may have mentioned this before, I went through TIPPS in May 2018, my liver has been functioning as good as it can: low MELD score only 9, no HE.

My doctors said not to take medicine and to cancel all my appointments for banding. The hepatologist said to deal with possible HE with memory check ups and brain function tests; he suggested to download for free and app called Stroop Test. My results do not indicate HE.

My husband, in the other hand, likes to prevent brain damage due to higher amounts of ammonia in my blood and, put me on low daily dose of lactulose- he is an internal medicine physician I must mention.

Two days a go, we decided to stop the medication because I may not need it; however, today I experienced a strange feeling of impatience and anger for things that normally I would be able to filter out; additionally, the test on the app states I am still within the acceptable perimeters.

For those of you who have experience HE, is anger part of the symptoms? What has been your experience with HE?

I don't want to ask my hubby, because I don't want him to worry. I will ask also the same questions to my hepatologist on my next appointment in November.

thanks,

4 Replies
Trust1
Trust1Administrator

Hi,

It is important that your own hepatology team clinically assess you for HE.

Hopefully our forum members can share their own personal experiences of HE with you too.

You may find our information and downloadable publication useful to read, here is the link;

britishlivertrust.org.uk/li...

Warm wishes

Trust1

hi when you have HE you need the lactulose, it converts the ammonia in your blood in to ammonium that you poop out. you will also have laxatives to help

HE can only kept at bay and the lactulose is your best weapon diet helps to.

HE can change you from rage and violence anger and depression and all things inbetween

Hidden
Hidden

Hi meteo

Not being rude to your hubbie but does he have experience in liver problems. It is extremely specialised!

As one who had HE for about 3 years before I was fortunate enough to be given a “new” liver I speak from MY experience. I am not medical in any way shape or form and due to the rules on here cannot give advice other than possible suggestions. 😀.

HE is not a joke as you will know. Yes it can make you angry, impatient, sad but seldom, if ever, happy. I have been told by my family what a different person I am since the t/p (transplant).

I was hospitalised about 5 or 6 times due to HE (see I cannot even remember how many!).

The last time was the most severe. Now from what I’m told It took 3 people to get me out of bed and down the stairs. In exasperation my wife rang 999 for the first time ever and I was carted off to hospital with blue lights and siren - shucks and I knew nothing 🤪. Apparently when my son came to visit I kept calling him by our dog’s name!!

Worst effect HE was when we went on a 21 day cruise for our 40th wedding anniversary and the very first night I had a bout of HE. The next day but one I became partially lucid and fortunately the ship had docked in Scotland en route to Iceland and Greenland (boo hoo 😢)

And we got off despite, apparently, me refusing to see ships doctor (you can imagine the fun of me trying to get insurance paid!).

So lactulose. It worked at first but then didn’t despite dose being increased and increased. In the end they gave me some self administering Enema solutions - charming - not 🤭🤭

Suggestion, have a chat with hubby about your concerns.. also go to specialist with list of question WRITTEN DOWN, otherwise, if you are like me, your mind will go totally blank when there. Do exactly what they say and do not be detracted from their “advice”.

All the best and let us know how you get on.

Thanks for the reply. My goodness, you painted a good picture of your experiences.

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