Liver Cirrhosis/ High Ammonia Levels

Hello, helping sister, welcome to the Hepatitis Forum.

WE are a group of patients and loved ones affected by many forms of liver disease.

Can you tell us more about your sister...where you are and what her liver diagnoses are? Does she have Hep B or C? Is she/what she an alcoholic, or perhaps has Auto Immune Hepatitis.

The stages of liver disease can be pretty much the same, but the way the doctors treat it along the way can be different.

I've told my partners story so many times...just check a few of the recent posts and you will read about it.

The question you ask is pretty typical...."how long..."

The answer is no one knows, but the question before any type of answer is "how sick is she."

While high ammonia can cause very worrisome symptoms of hepatic encephalopathy, one can be dealing with that for YEARS and neither qualify for transplant or actually DIE.

However, those with very advanced liver disease can have low ammonia, make perfect sense, and have very short life expectancy without transplant.

And the treatment folks get can depend also on where they live. US, Canada, UK, Australia, elsewhere.

Please take a minute and tell us a bit more about your sis.

And I'll tell you a bit about my sis...she is 67, lives alone 4 miles from me and has Stage 2 dementia.. She is handing all her person grooming and basic housekeeping, but she cannot do her bills, get anywhere in the car though she drives (worried, I go with her to tell her where to turn), can't remember any appointments though I write them on her calendar, can't use an ATM machine or use the gas pump card machines. She does no grocery shopping unless I call to say "I'm going to the grocery store, want to tag along?" She does NO cooking so I make sure she buys salad, fruit, lunch meat, cheese bread, beverages, and yogurt. It takes up a lot of time. But I love her and Mike is more stable now post transplant, so that it good. However, I have a lot of dr appointments for both of them (and me, I'm 70, and not as spry as I once was.) Now that my kids are grown and gone, I had not expected this to be my retirement.

Hugs,
Mama Lama

Helping Sis,

It is likely your sister is very ill.

Are you her primary cargiver? Has she husband or children who are her next of kin, or is that you?

I ask that because a person with liver disease who is in and out of coma, can be very ill.

Should she need assistance with advanced medical directives, wills and other estate matters, paying bills, etc, someone needs to be designated. Has she her affairs "in order?"

When my partner was very ill in 2010, we did all these things with and for him as he was too ill to really DO it, but I needed to be designated his medical surrogate as we are not married and he has only other distant relatives who did not know what he wanted should the worst happen. And you need a paper to remove life support, etc.

I recommend that you take a few hours and read and read old posts here. If you put in Mama Lama on the SEARCH button by the blue bar above, it will come up with a bunch of my old posts. My partner was ill like your sister and you could read my journey. You could put in Hep93 also. This is Connie, who we lost last year to this terrible disease. She posted until the end and her journey is pretty typical. Though her outcome was not favorable...that happens too often.

If you had some of your sister's blood work, we could answer better. Like her Viral Load for the Hep C, her liver function tests (AST, ALT), her kidney numbers (Creatinine, Billirubin), her PT and INR scores (how well her blood is clotting), and her platelet count.

The fact that she had those bleeds (esophageal varicies) is worrisome. I am certain they scope her often to be sure that has not returned.

Do they do MRIs now and again to check for tumors in the liver?

Has she had a liver biopsy to grade her cirrhosis.

Do they tell you if her liver is compensated (working even a little ) or decompensated (mostly not working)
Would she consider transplant? Is that available in your area...ie at a Major medical center that does transplant..most of the huge hospitals in the states do them.

Again, read read read.

There are some excellent websites in the Resources section from Pink Grandma above these threads.

Hugs and best to you, your sister, and your family....we KNOW this is a rough ride.

Mama Lama

MamaLama
She is still walking around and feeding and medicating herself. (as far as I know) I do not live with her. Her only daughter who is 25 and one of my other sisters live with her but they both work. How can you tell a very strong independent person to do all of this when you do not live with her but are very close. The only one that she actually as far as I know about her wishes is her daughter. As a matter of fact I believe they are somewhat in a bit of a denial stage. (which I can see I guess)
Its just very hard.
I actually believe she had a colonoscopy, camera test and ultra sound done (stomache) and a pancreatic test done. on one of recent hospital visits. All Clear on all of them. The MRI is the only one they confirmed once again that she had the cirrhosis of the liver.
But I will read everything you suggested... I need as much help as I can get

Thank you

I just wanted to say first of all thank you very much for all the information you have provided to me and guided me on where to find this information.
The more I read it sounds like my sister is at stage 4 of the live cirrhosis of the liver, and last stages of her Hepatitis C as well.
The one thing that we are blessed at the moment with is that she is still walking, and dealing with things.
I am not her caregiver because she does live with her daughter and my other sister. But can someone advise me on how can I educate them as well as herself because it seems they are all in denial about how to care and accept this?
any suggestions would be very much appreciated.

My sister is located in southern California and this last visit we have requested that the doctor on staff put in a request to have her transferred to UCLA which has approved the request. (but they are still dealing with insurance for the financial part of this) so no appt set up as of yet.
The two that are with her have jobs and are gone most of the day. So I have found out that she is left on her own at times .. and with her daughter at times she just locks herself in her room. I know that her daughter had mentioned on working on a care person for her but have not heard anything in the last 5 days since she has been home. (just as was said the last 6 times)
I guess I just tend to worry because I really learning and understanding what this is all about and I know she needs to be monitored on meds, food intake, water intake and how many times she does go to the restroom because of the lactulose. Also how sleepy she gets along with the beginning states of confusion.
Am I wrong in thinking like this?

Be their support, let them vent on you as it is very hard to caregive in this type of thing. The person you knew can be back, but they have a hard journey to get there and they can forget...who that loved one was, sometimes. I needed the support from others to get through it and accept and know we could pull through and I could have her back.

LACTOLOSE is the most important thing. There are several things that can be combined but that is THE most important thing, and THE most horrible thing to deal with. From both sides.

Remember her, and how she is there, but not all there. My wife described it as such 'Being trapped, knowing I could think but not get it out right. Not being able to convey what I really wanted to get across and getting angry at myself and anyone around due to that.'

I could see it, but others may not. You, and they, are the ones who will be there and can translate, so to speak. Be the ones who get her through so others (nurses, docs) see her for who she really is.

This will be hard, I will not lie. But there is an end, either peaceful, or a new start. Either way it goes, you have a loving group here, I know. They were there when I was at my lowest and sure I had a lost love.

Lean on others, here is absolutely no shame in learning there is love out there, and support for those of us faced with a change in life that is so drastic and blindsiding.

Hugs from one who has climbed out of that dark hole, into a new appreciation for life and love!

Thank you all for this support. I am very glad I have found you. I will keep you all posted as to what our journey will be
God Bless

I can't think of any reason why she should not be taking Xifaxan. You need to get a explanation. Common sense would dictate that a compromised liver needs all the backup assistance it can get. Lactulose is removing the ammonia and Xifaxin is working on harmful bacteria and toxins.

How long is a unknown with liver disease. Doctors can't accurately pin down dates or time frames. Members here including myself have reported being just fine with high MELD scores. Suddenly they crash. Others get violently ill with low MELDS. I got so agitated with worrying about reading blood work and trying to figure out if I was gonna die tomorrow that I forgot how to live today. Not saying keeping track of these things isn't good but the only people it truly helps is the doctors. They are the ones who dictate what, when and where if anything else will happen. You truly should write down a list of questions and at the next appointment ask them. Write the responses down. Doctors zip in and out of the room quickly sometimes. Have those pertinent questions handy when they zip through.


Ziff

Yes, The kidneys could rebound. I went into kidney failure myself during the half of my fight with ALD. They recovered fully.

Ziff