Very Scared Cirrhosis

SM, I'm a recovering alcoholic and suffer from cirrhosis of the liver. I was at one time in the same condition with ascites but for much longer and larger volumes. Your G.I is correct in being careful with diuretic dosages. Have you seen a Hepatologist yet? You need to see one ASAP. Has he been drinking still? He will have to stop immediately and start going to AA or substance abuse therapy to qualify for transplant.



Ziff

Hi, Welcome!

Your husband's MELD is 12. Normal range is about a 6. The MELD can change daily. I have seen this when my husband is in the hospital with daily labs to calculate the score. I am glad your husband quit drinking in Feb. I "strongly suggest" he get he go right away to AA at least weekly, and do that for 6 months. He will want to have a card signed for documented sobriety. Most alcoholics resist going to AA and getting documented sobriety even when they are deathly ill. Some die waiting.

My husband had Hep C and had treated twice when he went into ESLD with a MELD of 11. Themister was referred to a transplant center at that time.

Your husband, for a transplant list, would need 6 months documented sobriety, and he would need to pass medical and psychological testing at a transplant center.

The transplant evaluation consisted of 4, eight hour days for themister, (my husband). After that, the transplant team submitted his case for approval. Themister had to have the an insurance plan the transplant center accepted, which turned out to be our biggest challenge getting him listed. That was in July, 2013.

Where are you located? Perhaps someone here can help you with info on your area for transplant center's and info. We are in AZ, and my husband is on the list at Mayo AZ. Big Hugs, and Welcome.

Forgot to tell you once you've read her and her fathers story you can post questions on this post. I'm not being short but again so much of what you both are dealing with is addressed in her post just recently. Kinda keeps me from repeating myself . I ain't a big typer myself.





Ziff www.healingwell.com/community/default.aspx?f=25&m=3074561

Many patients, with advanced liver disease face the reality that driving is too dangerous. Some still drive, but do so locally...not on fast Interstate highways.

Your hubby may be there.

Mikes, doc grounded him about 8 months before transplant. And 6 months after.

Mike had lots of fluid and chronic HE that whole year before TP.

Who can say which caused his change in ability.

He mixed up directions. Lost his credit cards. Got aggressive towards other drivers, and drove like a race car driver on roids...rage, and all.

I wouldn't drive with him. Then when I asked the doc, that was it. He hated it. of course. But was, safe, at least. He harassed me every second about being a bad driver. UGH.

I hope you have the ability to take time off to be with him, or have family or friends nearb yto help out. This is going to get harder, not easier. At the end towards TP, Mike needed someone here 24/7. I know other caregivers have found the same. One of our posters, whose hubby, sadly, has passed, had to put him a nursing home for awhile because she had to return to work and it was too crazy with him home going who knows what with farm animals...

Is he taking Xifaxan for the HE? Ask his dOct if if not. That helps WITH the lactulose.

Let us hear from you,

Mama Lama

Yes I have read Scared's thread and yes we are very similar. So I have been worried about his ammonia levels as he is very slow moving and in his thinking he doesn't seem to be confused but he gets a strange look on his face its hard to describe, so I called his GI dr this morning so that they could check his ammonia levels tomorrow when they do his tapping I talked to the nurse she said she would talk to the dr and call back. So hubby calls me at work this afternoon and tells me the dr's office called and told him he had to go and pick up the script for the test, he said cant you fax it to the hospital and she said no I don't have he number. So hubby then called the hospital and talked to someone in the lab and first the lady said I cant do that it takes at least 15 minutes to run that test. Hubby said what difference does it make I have to be there and hour ahead of time anyway. Uggggggh! He said he felt like tell the woman at the drs office that she is lazy...lol So now we are talking about going to see a hepatologist. we live in Michigan and we can go to University of Michigan which is in Ann Arbor which is about at least 45 minutes away or we could go to Downtown Detroit to Henry Ford Main Hospital and see one. I am going to call Henry Ford tomorrow to see what I can find out.

He is not on lactulose and he has not been diagnosed with HE I just noticed that his behavior is changing so I wanted them to check it out!

I would have them look into his behaviour and nip the HE in the butt, as we have been through it for 3 months now, my dad was doing really weird things too, drinking water out of a bowl and there was no water in the bowl, asking why there are so many cars outside , my parents live in the country, there was not 1 car outside, stuffing toilet paper down the toilets, the whole roll. My dad has a very high MELD score of 30 and for years we went through draining, the worst was his whole entire body filled with fluid from head to toe even his testicles to the size of footballs he couldn't even walk. This was last year and he continued to drink. Please tell the person you are writing about if they stop drinking now, it is for the best!!!!! And eating low sodium diet like Ziff said. I feel for you, I am worried all the time. But we do have to remember worrying is not going to make things better and need to take it a step at a time. I'm so glad to hear he quit drinking, that's the most important part. I wouldn't wish this upon anyone what we are going through. This site is awesome, people have helped me out so much and I am grateful to them.

Yes, I don't want to see anyone else go through that. My dad almost drank himself to death, and I think if he quit 2 yrs ago after his bleed out he wouldn't have come to the stage of decompensation. Sasha mom, I hope hope hope he quits drinking, then there is a lot of hope, he can get better. With no drinking, taking care of himself and eating right. Ziff is a great person to ask questions, I have probably drove him crazy by now hehe whoops. I will try and help as much as I can too.

Hi everyone. Well I went with my hubby to have his paracentesis today and they took out 8.6 liters. I got to watch the whole thing. Towards the end it was like they were pressing on his side to get all of the fluid out it was like they were wringing out a rag but boy did his belly go down. He is very tired and is trying to sleep now.

His blood work: Ammonia was only a 36 not what I thought it would be but that's what it was.
Platelet count was 191
Ptt was 35
Pro Thombine Time was 14.7
INR was 1.17

I don't understand why he is filling up with fluid every 2 weeks he is not drinking and he does do the low salt is this just how it is going to be and isn't this hard on your body?

I called the GI dr for a recommendation for a Hepatologist and I am waiting for a call back so that we can proceed with that.

Thank you everyone for your help with all of this it is truly amazing!

I had my paracentesis done via the outpatient service at a hospital. I was weighed first, Placed in a temporary bed until nurses took vitals and then came the dreaded hospital gown. about 30 minutes later Radiology came to pick me up and bring me to there location in the hospital. Then a sonogram was done on my abdomen to see where the larger pockets of fluid was at. The Radiologist marked the spot for the tap to be placed and the physician on duty was called in to place the needle (tap). They removed the fluid through suction and took a sample of the fluid in the first liter then disposed of the rest. I had to shift to one side eventually allowing the fluid to flow into the tapped area as my stomach drained.

The Paracentesis took about a hour or more depending on wait for the physician. I was then taken back to my temporary room and blood pressure taken again while they hooked up the I.V lines for albumen. Seems like it was about 4 of the little 4oz vials when they removed 7 liters. Can't remember the ratio the nurse gave me exactly but there is a formula they use. Those 4 little bottles took a additional roughly 1-1/2 hours, That stuff is thick and clogs the IV lines quickly. Then there is the 1 hour mandatory waiting period before they will release you after the last bottle is done. Soda and tuna fish time......Yum, Yum!!!

I was out of it for the 1 hour trip back home and slept most of the following day also. As indicated in prior post, This went on 2 times a week after about 6 months in after initial diagnosis. Before I was only getting paracentesis done 2 times a month. I was following the rules and taking diuretics but the fluid would not go away. My liver was shot and could not process the waste quickly enough. This may be his plight. I have seen others here pull through this though without the need for TIPS, but be prepared for anything. TIPS was not a option until I was done with Sobriety documentation. I had to muddle through everything hanging on by a thread and no complaining to Hepatologist, He was hearing nothing of it.

I believe sometimes people assume I'm being a jack-ass (I'm really a pig) when I come down on hard headed folks about not getting on the ball. I'm that way because I learned there is no easy way out of this, Particularly when we are responsible for doing it to ourselves. I take no pleasure in seeing someone in pain but the price of responsibility is often paid for through pain. Hard headed folks (like me) need to have that message driven home sometimes.



Ziff

Thanks for your posts Ziff and David. I don't think now I could be wrong maybe with some time but I don't think that my hubby will ever get a transplant I know without it he will die I just don't think he has it in him to do everything he needs to do although I am very surprised that he stopped drinking I never thought that would happen. I told him last night about the have to have 6 months of documented sobriety he didn't say much but that's how he is I am hoping with some time he will change his mind. I by the way am going to AL anon once a week and I have plenty of literature to read in the mean time, I know all about AA as my brother is a recovering alcoholic 15 years so I no what it takes I am just trying to take care of me first and then my hubby that's why I am here to learn get some advice but most of all understanding and support.

SM, You know him better than anyone. about him quitting. Well, I suspect it probably wasn't a option to do anything else. I took my last drink the day before I was admitted. I was sick as a dog but still tried to mix a cocktail and toss it back. Like the day before it came right back up. I still managed to get past the nausea and continued to drink till I past out. Like every night before. My body was telling me to stop but I wouldn't.

I went through withdrawals while in the hospital(s) through the following months. Couple that with the renal failure and severe liver damage and the thought of alcohol became non existent. I hope I never forget that pain. Hope I never have to see my wife and child look at me like that again. Not breeding false hope but there is always a chance for him to rally and do what it takes. Look at me. I can't think of but one thing that separates he and I, when I was where he was at. Connie (former moderator here), A friend and my family that kept me from falling into the pit.

All he has to do is think in terms of today or the next hour. With encouragement and positive reinforcement those days and hours turn into weeks and so on. It's hard for everyone here no matter the way we got here. It's often harder for our loved ones. Ultimately he has the key to make you and him better. Better in the sense of die trying or try and live.


Ziff

SM: the part of this that is so great, is that you are getting out of the community docs realm and on to a major medical center with the Hep docs who know the score.

When we FINALLY got referred to UM/Jackson Transplant Center things changed for the better. We got the referral from a Hematologist who helped Mike understand some crazy blood tests...that led to understanding he was having internal bleeding (not esophical varices like some ohters, but they found it in his small intestines after a big search for what was wrong)....without that referral nothing good would have come of the treatment he was getting from the local GI doc!

Good luck. I hope he chooses to fight for his life!

Hugs,
ML