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

[nan535]

I see you have posted on a old thread. Your post is filled with good information which I'm sure will be helpful to many now. I know how difficult it is to be a caregiver and I commend you on sticking with your husband through all of this.

I have been my husband's caregiver for 3 years now.  He is post transplant with complications that have caused his hepatic encephalopathy to return. He is back on lactulose and Xifaxin which is working well now since he has a new liver. The doctors blame its return on a portosystemic shunt that did not clear. He also has periodic bouts of cholangitis due to bile duct narrowing     /blockage.  So the struggle continues but we take one day at a time and do our best to always stay positive.

[Kilima12nj]

Hi Diane, I am an RN who also has a husband with HCV who is dying of end stage liver disease. He has been refused transplant as he cannot stop drinking/drugging. He has recently been diagnosed as a diabetic but if you educate yourself online you will find out that diabetes in the context of HCV is not diabetes in the true sense of the word although it looks and acts like it. It is really hepatogenous diabetes (a term that has been around for millenia but that the Am Diabetes Assoc and W.H.O. do not recognize as a diagnosis). (This info is basically for everyone out there and not specifically Diane). As far as the edema goes, this is the result of several complex processes but the bottom line is that the liver no longer produces sufficient albumin to keep fluids inside the vascular system where they belong. Albumin is a large protein which is essential for maintaining what they call "oncotic pressure" (look that one up on Google). With low oncotic pressure, fluids leak out. This can result in ascites (fluid in the belly), swollen extremities and even swollen testicles. In short, anything that is dependent (i.e. lower to the ground, closer to gravity) is at risk for developing edema. This lack of albumin production is a sign of a failing liver - what they call "decompensation". When your body is still able to "compensate" for any deficits (like insufficient albumin) then the illness is still in the relatively early stages. Once decompensation begins to occur, the illness is progressing. Decompensation can include: (1) esophageal varices, gastric varices, rectal varices = these occur because the body makes "collateral blood vessels" to help carry the extra circulation which the liver can no longer accomodate because its pathways are blocked by scarring and fibrosis. But that fluid (blood, plasma) has to go somewhere so the body tries to compensate by manufacturing collateral vessels. Problem with these vessels it that they are extremely fragile and can rupture easily and cause massive hemorrhage from which death can occur if you are not "on the ball" and watching constantly. (2) SBP = spontaneous bacterial peritonitis. This occurs in the ascites fluid trapped in the belly. It is an excellent breeding ground for bacteria. Most patients with HCV have compromised immune systems and just do not have as many white blood cells (the fighters of infection) as they should. This puts them right in the cross-hairs for all kinds of infections. SBP can manifest itself as shaking chills, high fevers (not necessarily together). The first time my husband had it, it was only shaking chills but by the time I drove him to the hospital, he got out of the car and collapsed on the sidewalk and someone had to come and bodily lift him into a wheelchair as I was not strong enough to. Again, you have to be mindful of what the potential problems are and keep a close eye on your loved one. The presence of ascites always puts people at high risk for infection. My husband wound up having a T.I.P.S. procedure and he has had no further problems since he had this done. (Again, look it up on Google and educate yourself). Prior to that, he was having to be drained of up to 4 liters of fluid every 2 weeks. This is exhausting for the patient to undergo and puts them at high risk for infection as a needle has to be inserted thru the abdominal wall, thus creating a inlet for bacteria to get in from outside. T.I.P.S. is not something every patient qualifies for, so it is best to ask your provider about it and see if it might be a good option in the case of recurrent ascites that does not respond to diuretics etc. As far as what to expect at the end, I am wondering that myself. Doctors, unfortunately, do not have the time to talk to us the way that they should. I have gotten most of my info on death from this disease from people I know who have had spouses die of it. It appears that it is different for everyone, which is why you cannot seem to get a straight answer anywhere. One of my friends said her husband became very agitated at the end but knew he needed to go to a hospital. When they got him there, he was no longer able to breathe on his own. They put him on a ventilator and kept him alive for a week at which point he was "extubated" and died. My husband, on the other hand, has had terrible bouts of "hepatic encephalopathy" - resulting from the body's inability to deal with the ammonia that is produced everyday as a by-product of protein metabolism. That is one of the liver's jobs. This means he has "altered mental status" - is confused, usually recognizes me but may not know date, time or place. Lactulose usually corrects this but I know a time will come when the Lactulose will fail. He is now sleeping alot more than he used to. This is invariably a bad sign in general. I know all my dogs that have died of old age began to sleep alot more in the last 6 months of their life. They would playing one second and the next you would turn around and find them out cold, fast asleep. My husband now has no energy and if he goes out to run errands for a few hours, he will come home and sleep for 18 hours straight. Part of this may be that his body cells are not getting the sugar they need from his blood stream. He is taking insulin but it does not seem to help and the doctors dont know what to do, except give him I.V. insulin when he lands up in the E.R. - only a temporary solution. Another way that people can go, and I hesitate to put this here but I know that people want to know the truth, for many reasons the brain can swell with end stage liver disease. Problem is that the skull is a very confining structure and when the brain starts to swell, it literally has no way to go - except for one. Think of pictures you have seen of skulls or look one up on the internet. That hole at the base of the skull is called the foramen magnum. When the brain starts to swell, whether it is from a gunshot wound or end stage liver disease, it has only one way to go out and that is through the foramen magnum, which is a form of herniation. The structures that are at the base of the brain that would herniate out first are those that control respiration, heartbeat, etc - functions that we don't have to think about or consciously do because they happen automatically. Once the patient is at this stage, they will be placed on a ventilator. I have heard stories of patients not dying of this complication immediately but cannot imagine someone surviving for long in this situation. I see so many people on this site having questions and not getting answers. The bottom line is that no one knows when or how your loved one (or mine) will die. There are many ways to the end, just as there are for all of us. The best we can do for them is educate ourselves, be aware of what is happening to them at the end so that we can catch it/forestall it if possible. My husbands doctors readily admit he would have been dead years ago if it were not for me. But, even with that, when the time comes nothing will stop the dying process. Just get as much time with your loved one, for as long as you can. If you are their healthcare proxy, when the time comes to let go ... you must think of them and allow them to go by signing a DNR if they do not already have one. Being merciful to someone you love is the last and greatest gift you can give at the end of life.

[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.

[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.

[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

[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

[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

[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

[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 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

[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

[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

[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

[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.

[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