Looking for some answers

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New Member

Date Joined Mar 2010
Total Posts : 2
   Posted 3/19/2010 8:29 PM (GMT -7)   
Hi, my 53 year old father was diagnosed with HCV about 6 months ago.  His general condition has been on the decline ever since.  On diagnosis he was told that he did not have any cirrhosis but that due to "unexplained pulmonary hypertension" he was not a candidate for inferon treatment.  It is now 6 months since this diagnosis and last week he became so filled with fluid and disoriented that my mother took him to the emergency room.  He was admitted and after 6 days he was told that he has stage 3 cirrhosis and will not be a candidate for a liver transplant due to the pulmonary hypertension.  He takes lactulose 3x's a day along with about 7 other medications, he trembles constantly and is always cold; he is on oxygen but still short of breath and obviously suffering from encephalopathy (he just lacks all personality)  He did lose 50 lbs of water in the hospital but can now only have 1 liter of water per day.  He is not getting any better and I am super sad:( I feel helpless and am scared...not that he will die, but that he will die in pain.  I am wondering if anyone has been in my shoes and could offer some advise or clue me in on what to REALLY expect.  It all seems so fast.

Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 3/20/2010 10:49 AM (GMT -7)   

Nage, hello and welcome to the forum.  I am sorry to hear that your father is so ill.  I also have hep C, diagnosed in '93.  The thing about this disease is that one has it for decades before it becomes symptomatic.  I know I contracted it in '68 or '69.  If your dad is unable to take the standard treatment for it, and is not a candidate for transplant, he will continue to decline.  All they can do is treat the symptoms of ascites and encephalopathy.  He will probably sleep a lot and this is normal for someone with liver disease.

If you will go to the Hepatitis Resources folder at the top of the page, there is a lot of good info in there that will give you some idea of what to expect.  Is your dad seeing a hepatologist (liver specialist?)  That is recommended.  If his doctor feels he has less than a year to live, then he can be referred to Hospice.  However, at that point he cannot receive anything that is considered "treatment."  He would receive comfort measures only.  Since you are concerned about him having pain, they would make sure that he doesn't.   However, it may be too soon for that just yet.

I also recommend that you read some of the older posts here to give you an idea of what to expect.  You will certainly receive a lot of support here.



Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Regular Member

Date Joined Nov 2009
Total Posts : 64
   Posted 3/20/2010 4:50 PM (GMT -7)   
Dear Nage,

I am so sorry that you all are going through this.

You have found an amazing support network here, truly blessed with angels to guide you.

I love the fact that you do not fear your Dad's death, but just pray that he will be spared the pain.

I know this is a very difficult position to be in as a caregiver. I read these posts almost daily and cry every time.

Please be certain to continue to reach out to your family here in this Forum.

It's all we have.

Pink Grandma
Veteran Member

Date Joined Nov 2006
Total Posts : 2445
   Posted 3/20/2010 8:46 PM (GMT -7)   
Hello Nage and welcome to HealingWell. I know that you are scared and that's normal given the circumstances. All of us here have experience in one way or another with liver disease and know that fear well.

It's the best thing that you can do is to get educated on this disease so you know what to expect and what to do. After you read the educational thread as Connie has already suggested come here if you have any questions.

Again welcome to our cyber family.......thoughts and prayers......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

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