end stage liver disease

[summer7777]

Hello, I was wondering if you could answer some questions for me.  My x has end stage liver disease, Hep C and is a diabetic.  He is definitely at the end stage with no hope of a liver transplant.  He is currently still taking Methadone.  He is swelling up, his belly is as big as a 9mth pregnant woman.  He is having blood transfusions and having the fluid drained now once every two weeks.  He has the bands to stop him from bleeding out, but these don’t seem to be helping a great deal.  He had a spell there where he did pretty good but now has had a set back and the swelling seems to be staying……

My question is this.  When things are as bad as I have mentioned, how long does that person have to live? I am talking about the father of my daughter.  My daughter is 8 yrs old and I would like to prepare her for the worst.  Her father is currently in the hospital and they would like to keep just how serious his condition private from my daughter and I so as not to worry us.  I feel I need some answers so I can be supportive for my daughter.

I have read prior messages from people and its hard for you to tell with out first seeing the patient, I realize each case is different and of course people differ.  I am looking for a ball park of time.

Thank you in advance for taking the time to view this message, I appreciate any and all advice you can give us.

[cuteus]

to clarify: we are a patient to patient forum and although we have the wisdom of some RNs that post periodically , their view is given as an opinion, since, as you said,  no one can diagnose without seeing a patient first.  
From what you have expressed, it seems as his illness is very advanced and seemingly terminal.  You should prepare your daughter anyway for the worst outcome. Children are amazingly perceptive and she probably already fears his death, but might not bring it up to spare you.  Don't wait too long.  If a miracle happens and he recovers, you can use it as a lesson of hope.  A grief  counselor or clergy may be of assistance in this transition.  
Best to you and yor child

[imkindly]

summer, I'm sorry to hear about your ex.
Doctors use something called a CTP Score to estimate life expectancy in advanced liver disease.
The score is based on 5 questions (you receive a point value for each of your answers to those 5 questions... and then total your score)
There's an example of this at:
http://www.fpnotebook.com/GI44.htm

[summer7777]

Thank you to those of you who have commented on my question and my apologies to cuteus as I was unaware that this site is not to answer questions but to share.  I guess I saw this site and was grateful to have the insight that you all have provided....thank you again as I have no real idea about this illness only what I have seen through my x.

My hope is for all of you to find peace of mind and health...this is a terrible disease and my prayers and hope are with you all.

It sounds like there is a lot of hope out there and if the individual looks after themselves that this can be a saving grace....for those who are abusing there bodies still, please.... it is awful to witness just what this disease can do and how it tears families apart...and now a child may be without a father far to soon in her little life...

I will pass on your site to my x and when he gets out of the hospital he may find some solace here.

Thank you once again.

[cuteus]

We DO answer questions here, but (if you noticed that little waiver after your question which is a pretty recent thing), we can only do it anecdotally and not as medical authorities.  Of course, you know that wisdom and knowledge does not a degree and license need, so check back for more personal experiences from which you can draw strength.
No need to apologize, I just did not want you to wait for the DR to show up and be dissapointed...we get some new questions of people tthat think they are talking to a dr.
I hope your x can be discharged home, and if need be, placed on hospice to assist in his transition. Maybe a miracle procedure or med is been used somewhere that someone here knows about.  
Do talk to your daughter, children are stronger than we think, but they need honesty, and so do You. insist on some answers from his drs if they have your x consent to discuss the case with you.  Did he sign a consent?
Many are already praying for you and your family here.

[Diane3680]

I went with my husband to hear for myself what is going on with his liver disease (cirrosis), knowing he also has hep C and is diabetic.  I looked at the computer monitor while she was talking to learn he has been deemed with "end stage" liver disease.  A direct result of the acsites is a herniated belly button where his belly resembles a porpoise nose.  Once in a while he has an intestinal block and he is hospitalized.  He has had other weid things happen to him and I wondered if anyone has ever heard of it.  His potassium levels and calcium levels were so out of wack they were afraid of a heart attack....he is 53.  Also, he retains a lot of fluid in his feet and legs.  One day his big toe and 2 others had giant, I mean HUGE water blisters on the tops.  His feet looked like a blown up surgical glove.  Anyone experience that or ever hear of that???

Thanks, diane

[KjFlicka]

It sounds like the swollen feet you are describing is a pretty common side effect of liver disease called edema which is basically like ascites of the feet. I was fortunate to never have edema but I had bad ascites. I was tapped once or twice when I was initially diagnosed with end stage liver disease January 2008. I also had strange blockage episodes that caused a lot of pain and nausea. Interestingly, the vomiting seemed to have caused my potassium levels to go way down. So, let me tell you there are a lot of nasty side effects of end stage liver disease but guess what? I'm fine now! Yes, I technically still have the disease, but my blood levels are within ranges of normal people now and I'm not a candidate for transplant anymore because I don't need one!  I feel great and all I did was follow the directions of a very good hepatoligist and went at it like a soldier. I hope this gives you hope in that there is no time limit for you husband. I am 35 and plan on being here to see my grandkids.

Best of luck,
Nicole