ascites; refractory??

hi to all, hope everyone hanging in there and doing ok?

i have a couple of questions regarding my hubbys ascites and am hoping someone can help please?

quick background;

hubby was put on spironolactone 50mg pills around 8 months ago for the ascites. he takes, 2 x 50mg tabs 3 times a day. these seem to have kept the fluid at a reasonably stable level. now however his stomach is swelling again aand gets larger by the day. he is not yet at the point where it is affecting his breathing, as it was before, but the spiro has obviously stopped doing its job. i did expect this to happen as he still continues to glug away at his alcohol.

my questions; are there any other diuretics the docs might put him on? or is he now headed for paracentisis as his last resort?. he has been marked as child pugh c so maybe has around twelve months???? specialist consultant has refused to see him anymore due to his continued drinking so any thoughts on this would be welcome so that i might have a heads up on what is to come.

many thanks in advance.

xxnatasha.xx

 

Your husband is committing suicide in slow motion, though it will probably speed up, should he continue to drink. It's unlikely that anything is going to help his fluid retention (or any other health concerns) as he is still drinking. This isn't going to get better. Prepare for his going downhill, with you left holding the bag.

Geez David and Rick ......that was a little to honest .....

Blonde , No offense meant but that is the reality of this disease . If someone else who has actually lived through the process personally can give a sugar coated answer without feeling like they aren't being truthful I will be glad to listen without interruption . WOD not only asked for that response but she deserves the honesty , I think it better to face the reality of whats going on . She and her husband will be facing ever increasing difficult times . All she or anybody else in position can do is either stay and watch him die and get support with the care takers thread or leave him to die alone . This ground has been covered numerous times and without him quitting alcohol there is simply no other option , Callous yes , but if you read what I wrote carefully you will see the word " sad " .
Sad because he has the power to possibly change all this but worse his wife reads the horror stories here and I'm sure she tells him about them , Has it changed his behavior ? I love , I care and am willing to help anyone who will make a effort to change . Granted my way of saying things isn't pleasant to the ear but I am a stranger to most here , If you think it's bad to hear those words from me you better not try and qualify for a transplant at my hospital . They had no mercy on me whatsoever . I fought the disease , The doctors and death for a whole year before they spoke to me as a worthy patient . Guess my way of tellin it aint pretty , But by god it's the truth


Rick

hey to all, thank you for your honest replies. i am aware that he is headed for certain death and the last visit to the consultant told me exactly that. he moved out of our home a while back as i refused to watch him kill himself this way. he came back for a short stay and now refuses to leave. i have looked into a few things with regards to my legal standing in this situation but unfortunatly it would seem the law is on his side. i have nowhere else to go.
we dont have a relationship, he just lives in my house, which is sad as the children dont really understand the mood swings, and the inability to walk far and many of the symptoms you mentioned rick.
i suppose i wanted to know how quickly this might get to the point where he will be hospitalised and as nasty as this sounds once he is taken in there are things i can do that will see him granted access to a care home. i just do not want my children to see him self destruct so slowly when he has not made any effort to stop this. he held all the cards to his life two years ago when he could have stopped this. he chose not to. i did what i could and was as supportive as i could be. now he has to face these consequences.
i read somewhere that refractory ascites have around a 3-6month mortality rate. the docs wont do any more bloods and consultant will not see him anymore (i dont blame them),.

i am very aware that when the worst happens i will feel guilt and remorse but that is something i guess will be natural. at the moment i am in no mans land, almost like i am waiting for him to get put in the hospital, but i need him away from my kids and for that i am not sorry.
emma, thank you, but he will drink to the death.


elle, the reason i come here to ask my questions is because of the honesty in the replies. if i need a happy ending i watch some disney!! thank you for being so sweet though, with all you go through too. means a lot.x

so to sum up, the twelve month child pugh score could just come around? or may drag out longer? one more question if i may?,, how many diuretics must have been tried before they will class the ascites as refractory?
many thanks once again to you all.
xxnatasha.xx

WOD , I dont know how the law works in your area but I can say for sure that a man typically is the one to go when the police gets involved . Even though he may be somewhat coherent at the moment , That can change rapidly . Violence or bitter mood swings can put you and your children at risk . You have to look at this situation as potentially volatile , Ammonia building up can and will eventually get the best of him . He will hallucinate and likely wont be able to control his actions , He may never hurt you or the children but there is the potential and that alone may help you get a restraining order .

Sorry can't give you a time frame on how quickly this may spiral out of control . Honestly , It still stuns me how this disease operates ( Some die quickly , Some go on suffering and destroying lives in tow for a year or so ) it's so individual . I come from a history of drinking relatives , My grand dad died without any signs of Cirrhosis at 93 but drank a half gallon of cheap whiskey every day for as long as I can remember . My uncle died at 48 drank the same as grand dad , He swelled up became delusional and passed in 4 months . Both men drank to the day they died . Literally , Both died in hospitals with wives bringing them liquor smuggled in their purses . Me I almost died at 40 , Drank the same as grand and uncle , I have always been very healthy , Worked 65 to 70 hrs a week , No signs of any medical problems and it took me down in one months time , C-Diff , Renal failure , Acute Hepatitis , Edema and subsequently given no more than 3 months to live .
I hate this for you , I hate this for your children . All you can do if you will is to get him removed on the grounds listed above in the first paragraph . I am glad you have chosen a path of intolerance to being a party to his death all to often I see folks that acted as my grandmother and my aunt , Both good women with the best of intentions towards their husbands but refused to make them accountable for poor choices right up to the end . Sometimes even a little forceful motivation can thwart a lifetime of grief in the future , Wish my relatives would have thought that way .

Rick

Natasha-thinking of you. So sorry you are going through this.

Emma

Natasha , I will keep you in my thoughts and hope this will work itself out in yours and the kids best interest .


Others , It is not my wish to convey that your loved ones will for sure go the route I did . When asked for a opinion I will give it from my personal experience . I was lucky , Others have been lucky , I guess the definition of lucky is pretty broad in the scope of this disease . For me " I ain't dead " is pretty lucky but by no means was it luck that got me through the year or so of pain and agony .

Comparing Apples and Oranges . I don't typically respond to folks with A.I.H or Hep C unless alcohol is involved , and only then when they seem to acknowledge a problem . Although symptoms can be similar the alcohol factor is my experience ( Not expertise ) . No form of Hepatitis as I see it is a cake walk , Alcoholic Cirrhosis adds fuel to the fire so to speak . You cant treat Cirrhosis without first confronting alcoholism . Who says that ? Ask a transplant team , Thats why 6 months of verified sobriety minimum is required when alcohol is involved . Even then most people get subjected to constant badgering from medical personnel ( in my opinion ) to just see if you can be provoked to drink again . Rightfully so , I think .

Who gets the liver ? For lack of a better word would you say the innocent should get a liver first over the more apt to destroy there self Alcoholic , Doctors are aware of relapse of even long time sober alcoholics . " Innocents " for clarity in this case is A.I.H or other non alcohol or drug related diagnosis for E.S.L.D . Play God for a moment , Who do you pick when the time comes to give another shot at life . All I can do as a recovering alcoholic is prove myself before the doctors who I in trust with that responsibility . I stay sober for my family and my life , I post here occasionally to help certain people who show signs of helping themselves in a fight on two fronts , Alcoholism and E.S.L.D . I intend on fighting this disease until it consumes me if that be the case , and if I can help one person with my response even at the cost of ticking off the entire forum then so be it .

Now , I must go outside and scold my dog who has just chewed my garden hose in half .

End of current Rant ,


Rick

Natasha, you and your family are in my thoughts during this difficult time.

Rick, Can I ask what your "verified sobriety" consisted of? I have ESLD, chronic cirrhosis due to alcohol. Been sober since May 3rd. (the day I went to the hospital). I see my GI again next month and I really want to impress them. I have been to AA meetings, maybe 1 a week, but that was all I heard to do. I'm sure they check my blood every time I go in so I hope that helps. Please let me know if there is more I can do to better my chances. Thanks.
Jeff

Hyde,

Mike had a similar requirement.  He went to AA 4-6 times a week for 6 months.  (They say if you were a daily drinker, going daily would be a good idea...put as much time into recovery as you put into drinking.)  He bought  a calendar with big squares and the leader signed each time with the type of meeting (newcomers, speaker, 12 steps, etc.). They sign at the end of the meeting so the people STAY. 

His doc gave him the choice of going many times a week to AA or in patient de-tox plus therapy after the 28 days.  We decided against that as he was near death at that point and we both hated to think of him dying alone.  And he wasn't really at the detox stage then..he'd been sober a while.

I can tell you many days I dropped him at the door of the AA meetings  (he could no longer drive...wasn't strong enough and didn't have the mental acuity)  and passed him on to his sponsor to be sure he got up the steps and found a seat.  He was so skinny and so sick.  The members had my cell phone to call in case he needed medical attention.

Mike had to go once a week for six months for an ethanol blood draw at his PCP clinic also. These transplant folks are not kidding around.

A psychiatrist met with him several times to decide whether to send a letter to the transplant center that he would be a good candidate and likely to maintain his sobriety for life.  He did that part of the program when he began to feel better. His MELD went from 24 to 17 for a while during this new sobriety and he gathered some strength, started walking on his own again, had some color other that bright yellow.  (He went down again, but that was toward spring.)

He stopped drinking in September 2010, but didn't start attending AA meetings until November...so November began the OFFICIAL 6 months.

HOWEVER, once he was 3 months into his sobriety, and VERY ill again, the transplant center began his pre TX testing during a hospital stay for renal failure.  They realized he was serious and needed that TX.

Then they found a small Hepto Cellular Carcinoma, cancer tumor, in the liver in February 2011.  His 6 months documented eneded at the end of April.  During April they confirmed the HCC was doing its thing...

He got his liver May 1st, 2011.  If he had not gotten that liver, he couldn't have gone much further and I'd be posting on a grief website instead of this one.

Remember that  these transplant centers have limited organs and they want to dole them out to recipients who are going to LIVE.  Positive outcomes they call it. And the centers are talking about 95+% success ratios after a year and not much less than that in 5 years.  They want candidates who are well enough and committeed to their LIVES to get the limited number of donor livers that become available...from families generous enough to allow their loved one to have their death become a blessing to another after a sudden death.