End Stage Liver Disease

Hi Pam, I can't offer much advice sorry but what I want to say is perhaps you both could watch what you eat together? If you are both having to lose weight this has the possibility of really in stilling in him the fact that he's not doing this on his own with just your help but maybe he will realise that you are both weight watching together as a full partnership?

about his medication, my own mother was very ill, not with liver disease but with something else and there were days where she would get really confused as to whether she had taken her medication or not and those little week trays did not help as she would even forget what day of the week it was. My dad was oblivious to this even though they are still together everyday. I used to call him everyday to ask him to take over her medication and everyday his response was "she's not that bad, she can sort her own medication out". Oh how it used to drive me insane! So eventually I called their general practitioner and asked him to call my dad to tell him to take over my mums medication. He agreed to do so and from that day forward my dad would keep her medication and give it to her as instructed by the doctor. In fact he was told to hide her medication away so she wouldn't be able to take a second dose having forgotten that dad had already given it to her. My mother was not in her right state of mind at the time so this decision was not made by her but honestly she really benefitted from this and had dad not done it she would have overdosed as it was only a matter of time.

Surely you could talk to him and ask him if he would prefer it if you were to give him his medication each day so he wouldn't have to worry about forgetting to take it or forgetting he had already taken it? Sometimes small changes like this can make a big difference.

Thank you both! My husband is third generation Chekoslovakian, and so stubborn! His brilliance really makes the encephalopathy worse, because he has been so intelligent he thinks only he is right. I have removed everything from the home and am in position to cook right and have. He will only eat correctly occasionally, and Goes out to get what he wants and tries to hide it from me. I am a wise woman though and I know what he is doing. The dr's put me in charge of his medicine a long time ago, but my husband doesn't want me to be in control of it. We have had many arguments about all of this.....not a pleasant quality of life for us, so I have let him have his way. He has the medications you mentioned for the encephalopathy Lactulose and Xifaxan since 2010. We have been dealing with this disease for a long time now.

I only gave you parts of the whole last night......last year he had pleural effusion and had a new kind of experimental tube inserted to drain the area everyday. i was in charge of draining it, and a nurse would come twice a week to check on him. He almost died from smothering in fluid before it was placed and drained. We drained a pint off everyday. His diaphragm had a hole in it and the ascites from the abdomen was going in the pleural space below the lungs. one lung collapsed and a major infection came on. Within hrs he went from fine, to when the ambulance came, he had been vomiting and was trying to pass out, I was saying hang on! When the ambulance came his blood pressure was 45/27 and they lost him and had to revive him on the ambulance. I went into hysterics because my former husband died right in front of me at an emergency room with a massive coronary in 2002. They put me on another ambulance and my blood pressure was 2??/13?, and I had to calm down before I could be let off and drive to the hospital. They couldn't take him to his liver hospital here in St Louis, but had to take him to the closest local hospital which was a big hospital that most people didn't care for. They had him in the ICU E.R. unit and his ammonia level was 70 and he had tubes coming out everywhere and was at death's door, of course on oxygen. When they got him stable enough he was sent to ICU room on the floor and they took the tube out and put in a regular chest tube and started pouring antibiotics into him. He had very low blood pressure for a week and a very serious infection and a collapsed lung. He was in ICU for a week, and then put on the regular floor for a week; his kidneys also were trying to shut down for a while there.

When they got him stable enough, he was transferred to his liver hospital in downtown St Louis which is called Barnes hospital. He was in there for over a week because his kidneys were not doing well....i found out months later that his meld score was 40 at that time. I knew he was very sick. The dr at that time pulled me into the hall and said your husband doesn't look gravely ill or act it, but he is VERY sick. i told him I realized this because I had been told that before. My husband has a strong will, strong genes, and trusts in God with his whole heart. We saw many miracles.

They put another chest tube in again! We didn't want the first kind and they wouldn't listen, so it got infected, and when he went into the hospital that time, they took it out and did a TIPS. That saved his life. It is still clear, and 4 weeks ago he went in with all the fluid in his tissues and encephalopathy, and they had to use albumin to pump up his kidneys so they could use Lasix to drain the water. J. gets joking and silly, then turns grouchy, and then sleepy and grouchy with high encephalopathy, that is when I know he is getting worse. he is grouchy now. i am trying to make him take his Lactulose and he has been throwing it up.

Bottom line is, he will not listen to me, he gets mad at me if I say anything, and until he gets completely out of it, i can't get him to call the dr or go to the hosp. I just need to vent! My two sisters are RNs and told me you can only do so much. His liver nurse said the same. The last time he was in the hospital for a week, and the dr told us he would be in and out from now on.

Thank you for the replies, my nerves are shot! You are helping just knowing people are out there who have and are going thru this like we are. Thank you so much! God Bless!

Post Edited By Moderator (hep93) : 1/7/2013 7:02:43 PM (GMT-7)

Ongoing, your husband is a very sick man. I agree....take care of you.

I broke your long post into paragraphs and corrected some words, to make for easier reading.

Hugs,
Connie

I must sound silly, I didn't remeber posting before tonight. please forgive my repetition.

What I forgot to mention tonight is that my husband is so argumentive with the encephalopathy, that I have gotten to where I say yes to most everything he suggests and asks.  I don't want an argument and he thinks he is not argumentive. He imagines things, and it's getting harder to deal with.....I really need some response, advice with this part of the disease. Thank you.

Pam,

I surely am no expert but i do know about encephalopathy....my brother had it often before transplant and yes, he tried to avoid taking the lactulose, (didn't like the idea of running to the bathroom all the time) especially if he was already trending up on the ammonia levels. 

I was wondering if you have tried putting it into a juice drink, or jello or something.  The ONLY way to get the ammonia level down for my brother was, in the doctor's words..."lactulose, lactulose, lactulose".  It got so high a few times (667) that he had to be given lactulose rectally in the hospital and for a short time had to have his wrists restrained so as not to pull out the tube during his HE episodes.  They start by giving him a dose or two every hour, then they go to every 3 hrs etc etc.

Maybe you could reason with your hubby that it is far more comfortable to comply, than it is to have a rectal tube or NG tube place in his stomach via his nose (which brother pulled out twice, and nurse pulled out accidentally once during his frequent hospitalizations).  Also, its a double edged sword because with all the bowel movements, you can't let him get dehydrated b/c that will damage his kidneys (happened to my brother)  Luckily not bad enough to require dialysis, but can easily happen so it is really important to maintain that balance.

I must say Im surprised that your hubby can BE overweight with this disease...my brother had "severe muscle wasting and malnutrition, mostly because he was dry heaving a lot and no appetitie.  You say he drives to get junk food, can you talk to the doctor on the sly and ask him to pull his license?  Maybe put his car in for "repairs" or at a friend's house? He shouldn't be driving anyway with HE,  you would be doing the rest of the town a favor really.

Not sure how much you can pull over on him, being that he is so smart.  Brother hit 3 curbs on his last trip behind the wheel.

I think that if he were my loved one, I would not, as Connie said, bring ANYTHING in the way of junk food into the house, only fresh fruits and veggies, chicken, fish.  Throw the salt shaker away completely, stick to herbal seasonings and CHECK ALL LABELS for sodium levels....shoot for 1 gram a day.  I know it is not easy, it takes work, and even harder if you work outside the home.  I love comfort food myself, but if his weight is preventing transplant, then he is in for a literal fight for his life!

Best of luck to you both, be strong.

Mae

 

 Ongoing , There isn't much I can suggest medically speaking above what Mae has written . I'm a little surprised they allowed him to get the TIPS surgery done with a history of non compliance . I've heard stories of people somehow getting through the cracks and somehow obtaining surgeries and even transplants all the while doing as they please . I guess this is one of those cases . about the only thing you can do is to hope for the best and take care of yourself .

 A. Ziffle

I would increase his dosage of Lactulose...either higher doses or more frequent ones.

Hugs,
Connie

Pam,
I could erase your name and put mine at the bottom of your post.

I too was certain I would lose Mike before his transplant.

And after, we know that he is on some new life schedule that is tenuous at best. He has problems. Older than his years. And very likely to pass before me.

He gets depressed about this and then pulls himself together and starts to be more positive. It is ME at the moment who is not very positive. I'm sort of down in the dumps...about him, about me, about our family. He washed the slider windows today...so, to me, he seems EXCELLENT.

Best to all,

Carol

Post Edited By Moderator (hep93) : 2/11/2013 5:03:04 PM (GMT-7)

Posted for Ongoing, 3/20/13:


long overdue update.......ongoing. My husband has made it til now 5/20/2013. praise the lord! honestly, I believe the Lord and prayers have kept him going. We moved to assisted living in Florida as we dreamed. We are going to be moving into an apartment with home health in a few days. We moved to Fl March 2nd of this yr. It has made us both feel better! My hubby has gotten serious about diet and exercise since we came here, and had been in hospital Dec. 2012, Jan. 2013, March 2013, and earlier this month for a few days each time. He is being recommended for a work up for a liver transplant soon. He is trying very hard to stay healthy and gets out alot now, which is encouraged by the dr's. His big problem today is the swelling in the legs. He is on diuretics and lactulose, but how the heck do you keep those legs from swelling? Even with diligance with the meds, it is an ongoing problem. Home health has him wrapping them with elastic bandages, and I try to get him to elevate them often, but well, it is a problem. Thank you for all of the advice and kind words....and yes, as a former widow myself, I know to cherish the time we have. But as a wife of one who got extreme encephelopathy about 3 weeks ago and was so argumentitive until he didn't know where he was, it still is hard living life with one so sick on those days. God bless you all! I will try to get on here more regularly. love, Peace, smiles! Pamelahttps://www.healingwell.com/community/posticons/icon5.gif