Sodium and End-Stage Liver Disease

angiesmommy, Hi and welcome to the forum. When someone is in end stage liver disease the liver can't filter out toxins and sodium (among other things). The kidneys are frquently affected by liver disease so instead of eliminating the sodium it is retained in the bloodstream. If it can't be eliminated it is stored and thus the sodium levels go up. He is holding fluid as a result of it. Noncompliance with his treatment is not unusual but EXTREMELY frustrating for the caregiver. The retention of the sodium causes many problems including swelling, especially of the hands, feet, and abdomen. Ultimately the swelling in his belly will make it more and more difficult for him to breath. You may notice some rapid breathing that is kind of shallow, sweating alot, and overall he will feel miserable. The complications can be quite serious if he is not seen by his Dr. He may have encephalopathy. I would encourage him to see his Dr to try and get the help he needs. On the otherhand, he is an adult and will ultimately make his own decisions. That's the hardest to deal with I think-noncompliance.
Shelly

Angiesmommy, Just wanted to welcome you to the forum. My husband also has trouble with ascites. I also have trouble with him sticking to the sodium restriction. It can be very frustrating at times. Please keep coming back. There are many people here to listen or answers any questions you may have.

Take care

Hi Angiesmommy, My husband does have cirrhosis. He was diagnosed in July 2006. He has problems with indigestion at times and gas a lot. I think that is due to the lactulose he has to take. He doesn't really belch alot though. I am sorry that it has taken so long for me to get back with you. I work alot and I have been having computer problems the last couple of days.

Angiesmommy, I will pray that your husband makes the transplant list. I agree with you. You can't make a person do anything. I begged my husband for years to stop drinking, but he never would. When he was diagnosed with cirrhosis he finally stopped. Now instead of alcohol encephalopathy is taking him away from me. My husband's varices haven't bleed so far. I am really afraid for that to happen.

angiesmommy, I often wonder myself if certain people have a deathwish. I would suspect that it does happen but not for the reasons we think. I personally feel it's because they think there is no hope for a full recovery so why bother? It is a very selfish attitude but on the otherhand I can somewhat understand it. I just refuse to give in to it so I continue to argue and try to give them back some self worth. I think especially men suffer from it as they can no longer have the control over their own body that they once had. They usually at some point deteriorate and are unable to work or unable to work and support their family the way they once did. I won't subject myself to be a part of any pity parties. Things are what they are and I try to encorage them to move forward not backward. Sometimes it works and sometimes it doesn't. The ultimate decision is theirs.

 Butterfly three, I sympathize with you and your situation. You are already preparing for a loss that you have not experienced yet. Please try not to dwell on the possibilty of a bleed. It may or may not happen so don't bring on a plague. It is hurting you more than you realize. Your stress levels must be a 10. I think that you are so very kind and loving and I would suspect very sensitive am I right? Don't even bother to answer that I know I'm right. For those of us that are nurturers we seem to be all of the above. I can tell you from a clinical perspective that you have to somehow get some control over these emotions. It is difficult I know but it can be done. One day at a time, some are good days and some are not. Above all try to remember a saying that I live by "If you lose control someone else has control". God Bless and you know I just love ya.

Shelly

Hi Angiesmommy, To answer your question about encephalopathy: The diseased liver becomes unable to filter toxins from the blood and causes it to build up in their system. The person can become very groogy and confused. It can lead to coma. Shelly has an excellent post on it that explains it in more detail.
I would work part-time if I could. We are waiting on my husbands social security hearing, which will be in April. I am praying that he will be approved. Otherwise things are going to get tough very soon. I feel the same way about my husband. We need each other very much. He has been my best friend since I was 15 years old (now am 42).

Shelly, You are so right about me. You would not believe the things that go through my mind through the day. I actually wish that I could give the problems to someone else and let them take control. Sometimes I just want to run away. My husband and I have had different things that we had control over during our years together. He was always the rock I leaned on when things got tough. He was always good at taking control during hard times and coming through for me. Now it is all left to me, and I am so very afraid. I think about all the people here that are going through so much more than I am and yet I feel unable to handle what I am going through. I always post "There is always hope", when in actuality I feel that things are hopeless most of the time. I know I need to get control over these emotions. I am really having a hard time doing it. I just pray for God to give me strength.

 ButterflyThree, we too are waiting for SSDI to come through. I was told if the patient has cirrhosis, no matter HOW they got it, they were eligible for benefits! My hubby is too weak to get online to refile, so I did it for him. Unbelievable. He put in 30 years at the same place and we are now living on my $900.00 a month and our retirement fund we had put away. No cruise in the future for us now. Of course i would NEVER blame my hubby; it's not his fault that this disease chose him, just like it's not your fault it chose your hubby as well!

 My husband is in bed all of the time now; the other night I thought he had been drinking because he was slurring his words. Possibly encephalopathy? Also, I thought I smelled sweet brandy of some sort on his breath, but he has alwways been a vodka drinker. Shelly, could this be what they mean when they talk about a "sweet smell" to their breath?

 ButterflyThree, did your husband have his varices banded?

Hi Everyone, I'm relatively new to this wonderful source of information and support. You are all so helpful and wonderful. I have been on a roller coaster ride with my son since 1999. He almost bled to death from an esophageal varices bleed in 1999. He has had a few more light ones since then. The docs know what to do and can fix it if the patient is seen right away. The damaged liver can't process the blood so the blood looks for other outlets..ie the varices...sores/weak areas..often found in the esophageous and the stomach. The weak spots may be related to acid reflux. The docs can band the sores during an endoscopy. My son has many bandings. My son's liver disease is due to drinking and the use of illegal drugs. Over the years he has tested fate by indulging in both. And he still lives. That man has nine lives! As far as avoiding the docs and the treatment from what I see, it is related more to denial. "If I don't see the doc then I don't have a problem". It is a form of survival skills. I have learned over the years that doctors don't always know what they are talking about and they do make mistakes. I can give power to my son by talking over what the docs are saying and by giving him some choices to agree, disagree, or seek other professionals. It helps. Yep, encephalopathy is related to the brain. High ammonia levels causes symptoms similar to altzhimers disease. Confusion, forgetfulness, crazy behaviors. If you suspect encephalopathy have that person extend their arms straight out with palms up. If the palms tend to twitch or flap, then he most likely has that problem. I hope this helps a bit. The more I know the less I know but sharing sure helps me. I guess the most important message is to not give up hope. I feel certain that as long as my son has me and his family, he will be with us for a long time. Bless you all, Lee

Hi everyone.  Hugs to all of you.  My Dad is in ESLD right now.  We've been thru one paracentesis procedure and the doc is attempting to use diuretics to keep the fluid build-up at bay.  I don't think it's working but my Dad is semi-comfortable at the moment.

Thanks for sharing - it's been comforting to read your posts just to know that we're not alone on this journey.  My Dad has been the sole caregiver for my Mom who suffers from crippling arthritis, so my Aunt and I are staying with them to make sure they're properly cared for.

The doctor for the first time advised my Dad that he was "on the other side of the mountain" now.  He spends more than 20 hours a day in bed now and his legs have taken on a bluish-purple hue.  It's a very hard thing to witness and all of us are riding a roller coaster of emotions.

This forum is wonderful - I appreciate all of you.

Leslie

FL

 Sorry i haven't been up to date with my posting and reading; alot has been going on around here. Hubby spends at least 20 hours in bed from fatigue; not necessarily sleeping. Still eating salt and hasn't rescheduled his drs. appt.

 Shelly, is the blue leg and calf Leslie's talking about from ascites? BTW, no, my hubby's not a diabetic.

 And welcome to you, Leslie! You'll find ALOT of support here

Hi Leslie. Welcome to the forum. I am so sorry to hear about your mother and father. They are lucky to have you. You have come to the right place for support. The people here have been so helpful and caring to me. Even when it sounds like I'm being pretty whiney. Take care and continue to keep us posted.

Hi Everyone!  I have been reading all of the post, they have been very reassuring and helpful. 

My partner suffer from ESLD. He was diagnosed in April 2005. He had been banded 3 times for the 3 major bleeds and has had several smaller bleeds. I have been through 1 coma and that when I was told about the amonia levels and lactulose.  It has been a long hard road and very hard to deal with.  He was doing ok till he had emergency surgery for his embilical hernia in August of 2007. (which has since popped out and is painful) He spent 33 day in the hospital. lost 70 pounds and could barely walk when they let him come home. Since then life has been a nightmare. Does anyone know about the electolyte imbalance? During his last hospitalization something happened. I know that all of his major organs failed at one point. He has a parententis (sp)done about evey two weeks to keep the swelling down and keep him comfortable. He is very depressed and also suffers from bipolor disease (not medicated) He drank for years to cope with the BP and his rock and roll life style.  Still does drink not much but still drinks and is not honest with his DR's. I guess I would like to know what I should expect from this point on? How much worse can it get?  We have a very strict low to no salt diet....drives me crazy but I know its good for me too. He doesn't eat much anymore..alot of fruit and homemade sauces...He's a GREATcook but it exhaust him to do it. One of the only thing he can still do.

Thanks for listening....I have no one that really understands or that I can talk to honestly about what is happening in my life.