Paracentesis and Cirrhosis

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Voglereh
New Member


Date Joined Feb 2016
Total Posts : 3
   Posted 2/1/2016 11:14 AM (GMT -6)   
I am hoping I can get some straight info here. My husband (soon to be ex unfortunately) has recently started undergoing paracentesis weekly. He is an alcoholic but is claiming that his doctor told him that laying off the liquor would be good enough for now, and that beer alone was ok. Which I think is bogus - however not being with him any longer I am looking for resources for his family. I believe he is classified as "large volume" paracentesis with the removal of a reported 20 - 25 pounds of fluid weekly. I have tons of questions, but mainly how long can the body handle this type of procedure? I mean this has got to be taxing on his organs and heart. He is young, 46, and has already had major complications due to his constant alcohol abuse. Does this mean his liver is just done at this point? How long before these weekly visits become more frequent, and is there anything he can do at this point to reverse this? I am also looking for resources for our children to help them understand what is happening.
This is such a terrible disease and I know we aren't the only ones ever having to go through this. Any info would sure be helpful.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 2/1/2016 1:40 PM (GMT -6)   
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
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Voglereh
New Member


Date Joined Feb 2016
Total Posts : 3
   Posted 2/1/2016 1:53 PM (GMT -6)   
Thanks. The problem in a nutshell is he WON'T/ CAN'T stop the drinking so he will not be a candidate for a transplant until such time as he decides this is the way to do. He is 46, been drinking 1 - 2 fifths a day since he was 15. All in all I am surprised he has made it this far to be honest. Way back in the day we did discuss this at one of the many rehab attempts he went through but unfortunately he feels like he is still invincible and will "beat this too" just like he thinks beer is less hurtful to him now than liquor.

He is being seen at a small local/regional facility currently and when we lived together he had excellent access to HIGH quality medical care, but burned those bridges I am afraid. However he is in a new state now and he could reach out if he wanted to - but his family is not well versed in this so hence my post.

I am looking for information for them to make them see how serious this is, and how it isn't that he is "just getting himself drained weekly" that there is more to this than just that. I have been to the academy of gastrointestinal surgeons for some info, and the AMA, and the NEJM for information about the process and to try to get them educated. Any other suggestions would be helpful..........

I have been preaching this for years, now it's happening and they won't pay attention. I fear for his life, just like I always have but am powerless to help in another other way than to provide quality education and tools.

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 2/1/2016 6:34 PM (GMT -6)   
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
"The truth will set you free, but not before it pisses you off."

woofer4
Regular Member


Date Joined Jan 2016
Total Posts : 35
   Posted 2/1/2016 7:03 PM (GMT -6)   
Hi Voglereh,
Well, you won't get better info or advice than MamaLama and Ziff can give you.

My heart goes out to you, your hubby and your family.
You are obviously articulate and well informed, but that's not the problem...rather how do you get an addict to "want recovery"?
It's so complicated, yet so simple.
You could put up a billboard on the front lawn saying,
"Please pay attention to the elephant in the living room"!
The sign would come down and the response would be "What elephant?" or some such nonsense.
He actually has to want recovery more than he wants to drink. But he's an addict!

I have been a recovering addict for close to 30 years now. Everyone's different, but addiction is the same for all of us...a road to hell and we drag our loved ones with us.
Myself, sure I wanted to stop using, but I couldn't. I prayed, I cried, I asked God to please stop me from using. Then I would tell myself I had a wonderful wife, children, home, great job, the respect of my colleagues, etc. I was in control and I could handle anything!
If it hadn't been for my loving wife (and boy was there some tough love there...but I needed it) and an intervention by two colleagues, I'd have been dead long ago. There was no way I could have made it alone.
I dunno, some people can walk into an AA meeting and get it, get a sponsor, listen and actually do what sober people tell them to do.
And it's true, it doesn't matter what the hell we think...hell, we're smart people...we can get up in our heads and create Disneyland...
Just do what we're told. Complicated and Simple.
Well, I could finally hear those voices and here I am...clean and sober for almost 3 decades.

Personally, as hard as you've tried and I don't think anyone could have tried harder...you're too close and there's too much baggage and hurt between you... Plus you're the only one with their feet in reality.

Is there anyone in his life that can get to him? A sober buddy?...a minister, priest? He may not ever be ready or able to really listen. Some of us aren't and some of us are just darn lucky...like myself.

God Bless you, but you can't fix him. It's really all on him.
My thoughts and prayers are with you.

woofer5

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 2/1/2016 7:20 PM (GMT -6)   
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
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Post Edited (themiz) : 2/1/2016 6:24:27 PM (GMT-7)


A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 2/1/2016 11:13 PM (GMT -6)   
Hey Woofer5, Ironically it was a clergyman that got me started looking at HW. I'm spiritual but not "Churchy". He was a old friend, Parts guy (buyer) with the company I worked for. Part time minister. A-hole threw a mean left curve with hoist and crane parts manuals. Dang near took my scalp off with a Shawbox manual in the office one afternoon. A decent preacher but no patience for smart mouthed techs. Spent the rest of the afternoon pondering the meaning of "Having the book thrown at you". Docked pay and company truck parked at office for rest of the week. Doesn't matter who or how you get the message, Get it, Study it and beware it may be your last warning.
Guy drove from Charlotte almost 2 hours away to help me and the wife out. He'd pick me up at my house and drive me to UNC. Every couple months without fail. Wife working and couldn't do it all. He gave her a break (very important) away from my chaos, and myself from being spared the verbal beating that ensued all the way to UNC. He in-turn got a laugh on Sunday about my shenanigans. Perhaps a jewel in his crown from the almighty for his Samaritan work. It takes a village of them to raise a clean drunk, ya know. HW has been no exception. Connie, David, Carol, Mitz and people like ya self are rare in this write it fast, Sum it up, World. Bandwidth and time are precious. Be good, ya crazy Kanook.

Ziff
"The truth will set you free, but not before it pisses you off."

Voglereh
New Member


Date Joined Feb 2016
Total Posts : 3
   Posted 2/2/2016 8:32 AM (GMT -6)   
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.

woofer4
Regular Member


Date Joined Jan 2016
Total Posts : 35
   Posted 2/2/2016 4:52 PM (GMT -6)   
I
A.Ziffle said...
Hey Woofer5...Be good, ya crazy Kanook.

Ziff

Crazy Kanook...hahaha. Well, I guess I'm close...lived in Maine for 30 years and my daughter did her pre-med in Kanook land. My wife and I were born and raised in Connecticut, be we escaped (hahaha) to Maine right after being married. I've always wanted the license plate...ExConn...but there'd be no livin' with the wife...lol.
Now I'm retired and down in the Blue Ridge Mountain foothills...love it here and I don't have to snowblow or rake the roof!

Yup, I get it about being spiritual, but not "churchy"... I'm the same way.
Have to laugh at the parts guy...a mean left hook. My colleagues that set up the intervention with my wife, well they sort of had left hooks of their own. I remember trying to bargain for a nice 28 day R&R rehab. They laughed so hard you thought I told the best joke of the decade. Anyway, I went away for 3 months and actually was known as a short-termer. All the staff and patients were health professionals...I didn't get away with any of my BS...even when I didn't realize it was BS...hahaha. The internist that picked me up at the airport said it was run like a minimum security prison. If you got a call at 5AM to pee in a jar, well, that's what you did.
Every day we had to work the local area detox and rehab units and you know what...it was exactly what we needed to do.

Fortunately, it all finally started to soak in to my drug-fogged "addict" brain.
Best thing that ever happened to me besides my wife and kids and I would have lost them too if it hadn't been for people that cared enough to help me.

Anyway, glad to be a part of this forum...good people, lots of life's experiences and wisdom to boot.

woofer5

woofer4
Regular Member


Date Joined Jan 2016
Total Posts : 35
   Posted 2/2/2016 5:57 PM (GMT -6)   
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
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