What do I need to know/ask? Newly diagnosed with end stage and not doing well. Ascities & encephalopathy.

[MsLiz]

Hi all. My 71yo mother was diagnosed with Decompensating Liver Disease just over 2 weeks ago. She was taken into hospital with ascities and diagnosed. She has no prior liver issues (to our knowledge) but has iron overload problems related to blood cancer. She was treated with water tablets for a week and discharged pending an app with the consultant which was put in for a week and a half from discharge date. Since then she has been lethargic, basically not getting out of bed, won't really eat and now has encephalopathy and went back in again yesterday so didn't make her app with the consultant. This has all happened so fast. Its very frightening. We weren't told about possibility of encephalopathy or actually much of anything. I hadnt realised the potential gravity of this until i had to google it to get information, the diagnosis was given so casually almost as if she just had a cold. I feel very in the dark. Does anyone have any key questions I should be asking the consultant? Does anyone have experience of these symptoms? Any words appreciated. Thanks all.

[jojokarak]

Sorry to hear about your mother's diagnosis x

Has she been prescribed any medication? If not ask for rifaximin and lactose for the h.e.

The consultants unfortunately don't tell you what to expect as different people suffer different symptoms some worse than others, it's awful but entirely normal for her to be lethargic and no appetite, make sure you tell this to the consultant and hopefully they will prescribe her some fortisip or the equivalent (it's a protein drink full of vitamins and minerals)

You spoke of you mother having iron overload there is a condition called heamacrotis (not sure if spelling right) but a few people on here have cirrhosis due to this condition ..

It's a hard condition for carers to deal with so please get as much support as you can

H.e is horrible it will change your mother's personality completely and she won't have any idea she may get angry but won't mean it

Here anytime x

[MsLiz in reply to jojokarak]

Thank you so much for this. I really appreciate you taking the time. All really helpful. Particularly good to know about H.e as she has been rather angry with us all which has been hard to take and I had no idea about H.e. as a possible cause.

[Hidden]

Good morning,

I am verry sorry to hear about your mother, the diagnosis must have been a huge shock to the family. It is important that you get a good understanding of what cirrhosis is and what the course of events might be. It might be helpful for you to look at the publications on our web site regarding cirrhosis:

britishlivertrust.org.uk/li...

britishlivertrust.org.uk/li...

britishlivertrust.org.uk/li...

Above all it is vital that you meet with your mothers medical team: why do they think she has cirrhosis, how bad is her liver function, is there any reversibility (eg does she have an infection that could be treated, is she dehydrated, is she constipated), what is her prognosis...

PLEASE CALL THE FREE HELPLINE IF YOU WOULD LIKE TO TALK TO SOMEONE ABOUT THE SITUATION 0800 652 7330

regards

[MsLiz in reply to Hidden]

Thanks, will give this all a good read through.

[jenngrady]

Sorry to read of your mother's condition, I hope she returns to good health soon. My dad was also diagnosed with a decompensated liver and we believe now it was the result of him taking oral chemotherapy (gleevec/imatnib) for his cancer condition. Of all, the most important thing to remember is that you must do your own research. From my experiences, I really think the Doctors are guessing because everyone is different.

If your mom has ascites (and I would guess cirrhosis), if her belly is still distended or her legs and feet swollen, ask the doctor to move forward with a "tap" or paracentesis. It's where they use a thin tube to physically drain the ascites from the abdomen. The pressure from this fluid on your mom's stomach may be causing her to refuse food. My dad's doctors initially refused to do it and gave him water pills, it didn't work, and in fact at that point made things worse and created the environment where he was extremely dehydrated and had an HE episode.

It wasn't until he was admitted to the hospital because he had encephalopathy that a doctor agreed to do it. This changed my father's appetite tremendously. Whereas he wouldn't eat before, he now eats three meals a day, snacks and asks to eat as well. If your mom is on any form of chemo ask them to lower or stop the dose until they find out what is causing the issues with her liver. If it's oral chemo or autoimmune hepatitis, they can give her another drug called prednisone that will help her tolerate the chemo better in stages until she can be weaned off.

Finally, for HE, you need Rifaxmin and Lactulose. It's basically medical grade probiotic and liquid laxative, it helps your mom not be constipated, flush all of the toxins in her stool including ammonia (this is really bad for those who have HE) because the toxins go to the brain and cause confusion. Make sure you never miss a dose and things will turn around. Be diligent. Don't give up.

Praying for your Mom's recovery soon.

[MsLiz in reply to jenngrady]

Thank you so much for this. I have been doing some research today since I can't seem to concentrate on much else. I was starting to think I shouldn't do too much, I don't want to be an armchair Dr bit I hate not being informed. It's good to have some reinforcement that it's a sensible thing to do.