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Posted 9/17/2009 9:34 PM (GMT 0)
My sis (52) was diagnosed with  90% cirrhosis liver gone ,  active hepatitis C and bleeding avarices ,   4 weeks ago.  She / us did not even know she had cirrhosis. And the dr.s are not givin her any medication except blood press pills ,  but they wont' tell us an estimated time of death, which I know that no dr. will,  but  we are all new to this and don't really know what to expect.  The said end state liver diesese ?????????  right now she seems fine except her back hurts,  so any help on this topic would be appreciated.
Posted 9/17/2009 9:59 PM (GMT 0)

Hi, Westex, and welcome to the forum.  I'm sorry that your sister is suffering from liver disease (it is "end-stage liver disease" or ESLD.)

Is your sister being seen by liver specialists (hepatologists?)  Has a transplant been mentioned?  Is her cirrhosis a result of alcohol abuse or from the hep C?  You need to garner some information to know what to expect.  I suggest you look at the Hepatitis Resources folder at the top of the Hepatitis Forum page.  There is a lot of information in there.

Again, welcome.

Posted 9/18/2009 1:02 PM (GMT 0)
thanks so much for answering, she is seein a hepatologist, transplant was mentioned once in 6 months maybe, i think that was to pacify everyone. it is achohol abuse for years and her hep c is active. i will ck out the hepatitis forum page
Posted 9/18/2009 4:47 PM (GMT 0)
Hello westex and welcome to HealingWell. I am sorry about your sister. If you still have any questions after reading the educational post don't hesitate to ask.

As far as the transplant I believe that they feel if they mention it and give a little info, that if the patient and family are really serious about they will take the ball and run with it. Everyone needs to take control of their own health care. My advice to anyone is if any doctor mentions transplant start going out for a that long pass. Meaning ask questions, get educated and take action. My husband and I both depended on the doctor to be his advocate in getting listed............wrong! We should have got in gear and started running for that long pass. Granted it is a long hard game. But it can go into overtime if the patient and family knows what game they are playing. I am not try to make this sound silly, because it really is not a game. It is very important to get educated and take action.

There are plenty of older posts directly relating to the question " How long?" So when ever you have time please go over them too.

Take care.........thoughts and prayers...........
Posted 9/18/2009 5:14 PM (GMT 0)
Westex,

I have everything your sister has.

ESTIMATED TIME OF DEATH? The best thing I can recommend would be to get THAT train of thought out of your heads right now. I have "end stage" cirrhosis and HAD hep c. But after 12 months on a Pegasys/Ribovarin treatment, I'm VIRUS FREE. I still have cirrhosis, but that can go either way! You liver is probably the toughest organ in your body. Scar tissue caused by the cirrhosis will not heal, BUT your liver can rejuvenate, and your sister can still live a relatively normal life, even without a transplant. My doctor was telling me last week that studies now show that liver tissue can continue to grow.

Encourage your sister NOT TO GIVE UP. I'm not going to say for one second that the fight will be easy, it isn't. But if your sister is willing to STOP drinking alcohol, start pampering her liver for a while and get on medication, she has a very good chance of beating this. DON'T GIVE UP!

As her brother, you might want to encourage her to change her lifestyle if she's still drinking, and support her if she decides to start the treatment. I'm here to tell ya.....IT IS BEATABLE, and she's counting on you to give her a hand, whether she says so or not. Good luck!!


p.s. I plan on living to be 84. I'm 55 now.
Posted 9/18/2009 7:34 PM (GMT 0)
I'm her sister, dr. not treatin her for cirrhosis or active hepatitis c, and i kno when u only have 10% liver left the hepa*** c keeps destroyin. she goin for a second cancer test the 28th, thank ya for ur answers
Posted 9/18/2009 8:38 PM (GMT 0)
RUTRO WAS UR HEP C ACTIVE
Posted 9/18/2009 9:07 PM (GMT 0)

Westex, I agree that you shouldn't give up just yet.  I have hep C, cirrhosis, and survived liver cancer.  I had a huge tumor that took up most of the rt. lobe and metastasized to the inferior vena cava (large vessel.)  Thanks to treatment at Mayo, the tumor shrunk and died, but also killed the rt. lobe.  The rt. lobe was removed (and will not regenerate.)  I am living on just the left lobe, but doing okay.  I have been cancer free for over 2 yrs.  The left lobe has actually grown some to accommodate the missing rt. lobe.

It is true that your sister will need to have 6 mos. of documented attendance at AA meetings or alcohol counseling.  The #1 best thing she can do for her liver is to stop drinking entirely.  I had actually stopped 7 yrs. prior to my hep C diagnosis.

I've seen many miracles here and your sister is still young.  As PG suggested, be her advocate.  Learn everything you can and ask questions.

My thoughts and prayers are with your sister, you, and your entire family.

Hugs,

Connie


Posted 9/21/2009 1:36 PM (GMT 0)
Thanks everyone, Hep93 we're not "giving up" but would like some more straight answers, no one told her/us she had to have aa documented for 6 months to get on the list, but i cant find an answer to my questions, if her hepC is active will she qualify for a liver transplant all and at her stage , I GUESS I THINK ITS WORSE TO HAVE FALSE HOPES, WHEN SHE COULD BE PLANNING OR DOING OTHER THINGS WHILE SHE CAN, IF HER CHANCES ARE HOPELESS AND SHE FEELS THIS WAY about IT,

I would want to be told the truth and not maybe a transplant or maybe in 6 months you will qualify and on and on and on, I know from other experiences no doctor will say you will die in 3 months or 1 year but the not knowing is driving her crazy, got an appointment with liver dr. on the 28th so guess we will go from there. Thanks everyone , this is a very informative site and appreciate your accepting us on this site.
Posted 9/21/2009 5:09 PM (GMT 0)
westex,

I'm not sure what you mean by "active". To my knowledge, the hep c virus is active unless it Has been eliminated from your system. My viral load was above 4 million.

The point I was trying to make was there's always HOPE with this disease. Livers are very tough organs. Some people have donated HALF their livers to a sibling or suitable receptor, and did just fine afterwards. The most important thing for your sister to do would be to STOP the destruction of her liver by the Hep C virus and of course, alcohol. There is more medical advancements developed to combat this disease today than there has ever been. You sister's doctor will brief her more on her tests and what they mean. He'll also recommend a treatment best suited for her. HEP C is beatable and your sister could live a relatively normal life. It is bad, but IT CAN GET BETTER!

And you're right about this forum.....the people on this forum possess a wealth of knowledge and can help in many ways. Most doctors are "book-smart", but most the people here have WALKED THE WALK. They can share experiences and stories they've already been through.

Good luck on the 28th! We're all pulling for your sister and you. <GROUP HUGS!!>
Posted 9/21/2009 6:41 PM (GMT 0)
RUTROW

MY understanding is it is ACTIVE when it is destroyin ur liver , u can have hep c but its not doing any damage. so at 10% liver left and active hep c , its confusing, and its progrssieve.
Posted 9/21/2009 7:54 PM (GMT 0)
Westex, you are correct.  Active Hep C means it is actively destroying your liver.  However, there are some people who have been exposed to Hep C (or B) and their immune systems have thrown it off.  Mine apparently did that with B, but not C.  Such a person will always test positive for the disease as they have the antibodies for it.  But it is not active and they do not need treatment.  All the people here with Hep C are in an active stage.  Otherwise, there would be no reason to be here.

 

It doesn't matter about the Hep C...she could get a transplant if the evaluations and MELD score say she needs one.  After the transplant and when she has recovered sufficiently from it, they would want her to get Hep C treatment to avoid having the new liver infected.  Hep C is a blood-borne disease.  Just getting a new liver does not eradicate the disease.  It is still in the blood.

 

My feeling is that she should continue to do things she wants to do, if she is able and for as long as she is able.  None of us knows how long we have...we have to make the most of each day.  Your sister really needs to get her mind away from "how long?"  Find out what she can do now to help her liver.  I know for sure that abstinence from alcohol and a diet of fish, chicken, fresh fruits and veggies (no beef) can go a long way in helping the liver.

 

Only the doctors can decide if she qualifies for Hep C treatment now or if she should just pursue a transplant.  It would be the transplant center that would inform her about needing 6 months of DOCUMENTED AA attendance or alcohol counseling.

 

Hope this helps answer some of your questions.

 

Hugs,

Connie

Posted 9/21/2009 8:04 PM (GMT 0)
u think she should start the app/whatever for a liver transplant now ???????????????? thank you
Posted 9/21/2009 9:32 PM (GMT 0)
I would ask her hepatologist to refer her to the nearest transplant center for an evaluation.  That is a long process, with lots of tests and psychological evaluation, etc.  They would calculate her MELD score and based on that, as well as her other tests and abstinence from alcohol, would decide if she is sick enough to be placed on a transplant list.  Only the sickest of the sick go to the top of the list.  She would first have an appt. with a Transplant Intake person.  As I said, it's a long process and she may not even qualify, so she may as well get an initial referral for a first appt.

Hugs,

Connie

Posted 9/22/2009 12:16 PM (GMT 0)
thank ya, so much, we will talk to the dr abt it again on the 28th. they're also supposed to do a colonoscpy too.
Posted 9/22/2009 9:55 PM (GMT 0)

Good luck and let us know how that visit and her colonoscopy turn out!

Hugs,

Connie

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