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End Stage Cirrhosis ... desp looking for answers please help

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Posted 7/7/2012 3:34 AM (GMT 0)
My mother is currently fighting end stage Cirrhosis, I have no idea what to expect. She gets liters drained from her belly every week, in and out of hospitals for that past year 3 months at a time. She has Hep C and Diabetes, her ammonia levels are high that she doesn't even know what day it is. I've been seeing this happen to her for the past year that I honestly do not know what is next or when it's really time to say goodbye. Doctors look at her as if she means nothing, due to this was caused from her past history. She is only 50 with a 12 year old, that will live with me when she passes..but how do I prepare him when this is a recurrent situation with her. When will I know her time is coming? Could someone please explain to me? Last night she actually had clots coming from her mouth, it seems like you cannot get a straight answer from any hospital she goes to.
Posted 7/7/2012 4:28 AM (GMT 0)
Jacbrilyn,

I know that some docs are kinda rough with Hep C patients. And plenty are not.

There are lots of ways to get Hep C...transfusions, medical transmission in unsterile environments (trauma, wartime, before the dangers were known), tattoos, IV drug use, snorted drugs, needle sticks.

And there are lots of ways to develop cirrhosis...auto immune disorders, poisoning, non-alcoholic fatty liver, hemachromatosis (too much iron), alcoholism, and Hep C and and and.

Do you know that Hep C is epidemic in the 50 - 65 year old age group...those folks who were infected before we knew much about Hep C? Worse than AIDS and will become a huge health problem in the next years?

Do you know that Hep C is the the #1 reason for Transplantation in the US at this time? Maybe worldwide too?

It seems to me that your Mother is being seen by a GI doc, not a Hepatologist. Hep C and cirrhosis is not a death sentence, though it can be if not caught in time. Often is in advanced stages bar transplantation.

Has your mother tried a treatment program? EVen if she has, there are new protocols that are working well.

Has your Mother's doctor talked about transplantation?

One reason docs DONT talk about it is if the patient is actively drinking alcohol. No transplant center will recommend a person to be added to the UNOS transplant list who is not 6 months alcohol free.

I know all this because my partner of 32 years has Hep C, had cirrhosis (Stage 4, End Stage), and liver cancer.

His Hep Doc told him he was doomed...3 months tops, if he kept drinking.

He had been seeing a GI doc, who was never clear about the drinking...he treated Mike like doo-on-his-shoe and said nothing...figuring Mike had bad insurance and was killing himself with booze, so why break out in a sweat?

The Hep Doc gave it too him straight...MIKE, quit drinking, go to AA and we'll try to work you up for transplant.

Mike did (AA many times a week for 6 months, calendar signed by meeting chairman) quit, did get evaluated, and instead of funeral for Christmas in 2010, he is 1 year post transplant and doing quite well. Not perfect...but not dead and having a good quality of life.

Oh, and welcome to the forum.

How can we help?

Carol
Posted 7/7/2012 1:54 PM (GMT 0)
Hi, Jacbrilyn, and welcome to the forum. I have hep C that resulted in cirrhosis and also had liver cancer twice. I had a transplant last Oct. and am doing well now, after a few post-op problems. Transplant does not rid one of hep C, so I still need treatment. However, it will have to wait awhile until I'm fully recovered from transplant and some issues resolved.

Your mother should be seen by a hepatologist, as ML mentioned. Even GI docs are not as knowledgeable as hepatologists. The thing about transplant is that one has to be sick enough to qualify for transplant, but well enough to survive the surgery. She should preferably be seen at a large medical center with a transplant dept. Her primary care doc would need to refer her, unless it's Mayo where you can request an appt. online without a referral. Insurance also plays a big part in who will treat her.

For information about hep C and liver disease, read the particulars in the folder at the top of the page entitled Hepatitis Resources. It also touches on "How long does he/she have left?" This is a very individual disease and nobody can say for sure how long your mom has left without treatment or transplant. Is she clean and sober? If not, she will not even be considered for transplant.

The clots from the mouth could be caused by bleeding esophageal varices. These are large veins in the esophagus or stomach that leak or rupture. If she starts bleeding profusely, it is a life or death situation and she should be taken to the ER immediately. These varices can be banded to prevent this.

Is she taking Lactulose? That is the treatment for hepatic encephalopathy (HE) which is causing her confusion. Sometimes a patient will also need Xifaxan.

Her having a 12-year-old is a difficult situation. Kids these days are very smart, so I'm sure he realizes his mom is ill. You should be honest with him without giving him excessive info. Tell him the doctors are working hard to get her stabilized. Ask if he has any questions. With the info you get from the forum, you will be better able to answer them. He may ask if she is going to get better or if she is going to die.

If you have any other questions, please feel free to ask. Someone here should be able to help you.

Hugs,
Connie
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