end stage liver disease

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

[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

[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.

[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.

[Diane3680]

I went with my husband to hear for myself what is going on with his liver disease (cirrosis (cirrhosis)), 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

[giddget]

i was tested at 3 mo for hiv test i was clean but adam did my last he mess with my needle For the past year and a half, Adam's been dating Paul, 41, an HIV-positive contractor he met when they were both heavily using meth. They have unprotected sex, though Adam knows there's a slight chance that they could infect each other with separate HIV strains; Adam could also infect Paul with his hepatitis B, which is transmitted like HIV, or Paul could infect Adam with his hepatitis C (new evidence shows hepatitis C can be transmitted through unprotected anal sex, not just through sharing needles). "My doctor will shoot me when I say this, but we sort of leave it up to luck," says Adam, adding that they set one limit: Paul does not ejaculate inside Adam

[sammzwife]

My husband has been battling end stage liver failure since July of 2008, he did ok for a while, but then his blood level couldn't be maintained, and he had to go to the hospital several times a week for blood transfusions, they've done esophgeal banding to slow the bleeding, they've been down in his stomach numerous times and used argon to seal seeping varices.  He was on 3 water pills to keep the swelling down and on a lifetime script for septra ds to keep the acites (ascites) from getting infected again.  His sodium level will bottom out from time to time and so will his potassium or sometimes his potassium will shoot up to like 5.4.  He's now been in the hospital for going on 5 weeks, his kidneys are just now starting to shut down, they've had to put a port in his chest and start dialysis, which wears him out terribly and he is horribly swollen, they've pulled acities from him once, but you really couldn't tell, his breathing has gotten bad enough, they've had to put him on a bipap machine instead of a vent for now.  All of this was caused because he happened to have a bad wreck in 1985 and had to have 13 pts of blood, which is where the hepatologist believes he got hep C, cause they didn't start scanning for it until '92.  All 3 of his doctors believe his time is short, it's an extremely difficult thing to watch a loved one die and know that's there's nothing you can do to help

[merryBe]

I'm so sorry to hear about Sam's condition dear, and I know I speak for the group...our hearts go out to you.

It sounds like everything that can be done for Sam is being done...but alas this disease is a sorrowful thing, a lousy way to end things, and extremely hard on those that must watch as well.

The only thing we can offer to you is our prayers, and the knowledge that you are not alone, and the invitation to keep dropping in for support...all of those in here have, or had, or had loved ones with this disease, so we know how you feel.

You might want to try reading to Sam instead of just sitting by the bedside. This was helpful when my friend Susie was dying of HCV.  It's hard to just sit by the bedside and watch...and I think it brought comfort to her as well as to me at the very end.

God bless and keep you.
merrybe

[Magnum]

I totally sympathize with you as I've gone through this with my father, who died of Cirrhosis at 62. He had an in-home hospice nurse when the doctor felt it was time. I'm not trying to paint a dark picture, but this is something I've seen with my own eyes and felt with my aching heart. There's an old and time tested expression "It's not over until it's over". Enjoy every moment with him you can and may he turn around and get through this...

Magnum

[martena]

I have cirrhosis  - would like to know what the advice given by your hepatologist was - and which you went at like a "soldier".  cheers Martena

[martena]

I just got report written in corner of my question. I didnt know what it meant - clicked on it and it said spam ...abuse.- I clicked on it and it siad reported. Im new - this is my first post - i dont know what i have done wrong - I was just asking a question off Nicole's earlier comment

[paen53]

Not to worry about the "report" button, it's happened before to others.

But back to your question, this is a rather old post and I'm not sure if Nicole pops in anymore. You could try clicking on her name and sending her a note or a mesage and see if she responds. Otherwise, you can start a new post ( see top of page, green "post a question' button) for more responses. Lots of us here with cirrhosis.

Or under the thread, there is a box titled "related questions" that can provide lots of info, albeit some of it dated.

[nygirl7]

Yes Martena you would be better off starting a "new post" and put all of your questions in there, it makes it easier for us to keep track of what is going on and for you to find them.

Dont worry about the report abuse thing I am sure MH will realize you were not reporting yourself for anything.

Anyway, let us know if we can be of any help.