Paracentesis and Cirrhosis

Volglereh,

Welcome to the HW forum for liver diseases. Our members are patients and their loved ones suffering with liver diseases....all kinds...auto immune hep, the viral heps, alcoholic hepatitis, etc. Though there are many causes, the phases of the disease seem pretty much the same.

The swollen belly is from ascites. The draining really makes the patient more comfortable and some here have been drained more than once a week. I hope Ziff pops in. He has been through this in a big way.

My partner Mike didn't have the swollen belly, rather he gathered fluid in his ankles, feet and legs (al the way to his scrotum called edema. The leveled him off using two diuretics that finally worked. We had a chart, he weight varied from day to day by how much fluid was being maintained. He was to increase or decrease the diuretics depending on how much he was above or below his base line weight.

What they can do for those with persistent ascites is called a TIPS procedure. They put a shunt in the liver that allows the fluids to drain more normally. Look it up. You can't live forever with a TIPS rather they see it as a bridge to transplant.

Have you ever talked about transplantation in his future if his liver failed? If so,he should know that UNOS requires 6 months of documented sobriety in order to get transplanted.

I am one of the moderators of this forum, a spouse of a liver transplant recipient with active alcoholilsm until 6 months before transplant. He did not need a TIPS procedure.. However, my co-mod, themiz, has been through that with her hubby.

I hope she pops in to chat about their experiience with TIPS.It has some good things annd some bad things going for it.

Is he being seen at a major medical center where the really good liver specialists are? If not, work towards being seen at least a couple of times a year at a major center.

Good luck, ask you questions we are a lot of folks who have been through the mill.

Hug
Mama Lama

Voglereh, Been there done this. I'm a bit older than him, Amazing thing the human body. How much abuse can it take? Well, That question has been asked in alot of ways here by caregivers. You seem to be approaching this honesty and with good intent, Shame he hasn't adopted your thinking. I will be glad to help and provide opinion/advice from my own experience. I am a alcoholic/addict. My experience has been almost identical to your ex situation.

He can stop drinking, I say he will stop drinking!!! Simply put he wont get better continuing on this path, Inevitably he'll die. Course we are all subject to that. He and I have the choice to fight or give in to early painful transition. Their has been few to cheat death at the point he is and I was. More fail to bow down due to pride, Nothing worse prideful than a alcoholic. We'll let pride ruin everything we touch as opposed to admitting a thing (addiction) whipped us. Easier taking a severe beat down by a gorilla, than uttering I'm powerless, For me anyhow. You seem to know this already so I'll spare you the preaching.

A spoonful of sugar can cause havoc to diabetic. Alcohol is no different to a drunk, May not kill him that minute but surely it will get him. Alcohol can come in many forms disguised as Non-Alcoholic Beer. Read the label carefully on that bottle/can. I confronted that situation myself. It's alcoholic to a alcoholic. No self respecting doctor would advise him "It's o.k". Dr.s have been around as long as drunks. They know our behavior. It's mental. A potato chip cooked in alcohol wont likely contain alcohol value. But for me if I know its cooked in it, Well it's easier to make that jump to real stuff. Same applies to others (people) he hangs with. Alcoholics. "Just one ain't gonna hurt, It's o.k". HORSE PUCKY!!!!

Regional facility. I was diagnosed by a small regional facility. Told I had Hep.C and liver and kidneys failed. Mis- diagnosed Hep.C ,but hit the mark with Liver damage and Renal failure. I can and have said awful things about our regional facility in my small town. I had to get transferred (Ambulance) to another upscale facility a hour away to correctly get treatment. I am fortunate to have two large medical colleges within 3-4 hours away also. UNC. Chapel Hill and Duke. UNC was where I got involved with Hepatology Dept. and transplant listing. They don't play games in transplant. You either adhere to policy or die. I had chronic ascites issues that went on for a bit over a year. Liters of fluid pulled weekly on each (2 visits). Roughly the same as your ex. Medications like Fluid retention drugs did nothing. Ascites got worse and side effects worsened. I quit drinking in 2008 after diagnosis. Got clean in ICU ward while in comma and Encephalopathy got reasonably controlled for a month maybe more.

Transplant program demands sobriety. No sobriety, No Real preventative life saving measures will be taken otherwise. Verified, AA meetings or private Shrink. They gladly opted to have the shrink do mine of course. Blue Cross and Shield!!! Thanks. Mind you I'm still getting Paracentesis done 2 times a week back then. That eats up 6 hrs. a day of outpatient and incoherently walk into shrinks office once a week or more. Sign paperwork at door and druel for a hour every other day. That went on until sobriety requirements was met (6 months). I wished I was dead back then. To boot all..... you have to pass by a ABC (liquor store) on way to UNC to be flogged by my Hapatologist monthly. Drug/alcohol tested random monthly. You Fail, you start the program over if your lucky. Sweet deal huh?? Will post more about some useful info later. Print this and let him have a read or get his children to read it to him and his family. Nobody gets a free ticket from suffering regardless if he does what is needed. But as long as you all remember the days of pain, the easier it will get when the good days show up more frequently, as he honestly fights for his life.

If Mitz hasn't I'll relink my Deeper explanation story also,
Ziff

Welcome Voglereh,

What a sad situation. I am so sorry to hear about your ex-husband and his decision to continue drinking. This is baffling and tragic.

Alcohol on a sick liver is like gasoline on a fire. The only cure for cirrhosis is a liver transplant. Unless he is able to remain sober for 6 months and meet other medical criteria, he is not eligible for a transplant, as you know.

Ziff had a similar situation to your ex. I am giving you and yours a link to Ziff's Alcoholic ESLD thread www.healingwell.com/community/default.aspx?f=25&m=3293465

Like Mama's husband, my guy, themister, does not have much ascites. He does have lower leg/ankle swelling. ESLD looks about the same regardless of what got one to that point.

Themister has cirrhosis from Hep C. He was able to eradicate the virus, but his liver was too damaged to survive without a transplant. He has been on the list for 2 1/2 years...waiting for his MELD to be high enough to be at the top of the list.

My husband's hepatologist suggest a TIPS (due to bleeds) while he waits for a transplant. He likely would not have survived more bleeds. He was referred for a liver transplant, and TIPS is known as a bridge to transplant. That was 3 years ago. I don't know why some are given TIPS and others are not, but your ex may wish to discuss this with his hepatologist. Here is info on TIPS www.radiologyinfo.org/en/info.cfm?pg=tips

There are side effects TIPS causes in a good number of cases. Hepatic encephalopathy (HE) can become a big challenge. My guy no longer drives, works, nor knows when he will have significant HE. We try to make sure he is never alone. He has been hospitalized for days with HE, had hepatic seizures, turned blue and appeared to not be breathing. This is pretty scary stuff.

People with cirrhosis can get HE without having a TIPS, and here is a great documentary on HE you may wish to pass on for his family that now cares for him. www.hesback.com

Here is a link to our Hepatitis Resource section. www.healingwell.com/community/default.aspx?f=25&m=52986

Mostly...

I strongly suggest Alanon for you and your family members.www.ola-is.org/

And this is an online support group I can suggest to all of you. www.soberrecovery.com/forums/friends-family-substance-abusers/

I hope your ex will decide he wants to live more than he wants to drink. My very best to you and your family members. Big Hugs

As someone who has lived with an alcoholic for 20 years, and lost a parent to this horrid disease, I applaud you all for being so strong and finding a way though this. My husband has been through so many rehabs I can't begin to count them all, tried the AA thing and left the meetings and went to his truck where his stash was hidden, yet continued to collect the chips and profess his sobriety. All this process taught him was how to lie better and cover it up more effectively (for a while). He claims to be an atheists and has refused to seek a spiritual connection of any kind. Only reason we got married in a church was to make me happy, go figure. He continues to twist the truth to his family and they continue to buy into it and support and enable his habit. I feel helpless at this point. The good news for myself and our kids is that we are fairly far away from him now and don't have to witness this. The bad news is that his self destructive behavior will continue to spiral out of control with the help of his parents unless there is a way for me to get through to them. Of course we are also dealing with the fact that they don't believe me because he has painted me in such a negative light since he went home to them. So really your stories are compelling, and yes I will print them and send them to the family in an effort to get them to hear me. But are there any other resources I can give them to shed light on this? My children and I will be OK eventually and they have been getting help to manage all this, but I still love this man regardless of what he has put us though all these years. After 20 years I am finding it hard to just turn my back, and especially now that he is terminal and his own worst enemy. He can make this change, but someone has be willing to be strong to make this happen. While I get that it is not my responsibility to do this - I still feel an obligation to help and want to help.
I mean how ironic is this - I am in the medical field with access to some of the best research around, and yet they won't pay attention because they think I am blowing this out of proportion and that he isn't really as bad as I am making it out to be.
God bless you all - keep fighting, it's worth it.

Hi again Voglereh,
I do understand that you still love this man and that this is breaking your heart, but...and it's a huge but...as I said, you can't fix him...nor can you fix his family who are enabling him. I don't pretend to know about your husband's family, but it sounds very much like they resent any help that you have or can offer...the well has been poisoned...so to speak.

I don't really know of any resources aside from what themiz posted.
Alanon, for eg., is an excellent resource for you and your children. I believe they could help you through this, help with the guilt and the awful helplessness and hopelessness that all of us as human beings sometimes have to face.

This almost makes me hope he gets so sick that he has to be hospitalized and, in turn, it finally scares him into reality.
I mean, I don't really hope that, but I'm sure you know what I mean.
Please, please, please, take care of yourself and your children.
God Bless.

woofer5