Sodium and End-Stage Liver Disease

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angiesmommy
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Date Joined Feb 2008
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   Posted 2/25/2008 9:32 AM (GMT -7)   
 Hi! I am new to this forum. My husband has end-stage liver disease due to excessive alcohol over the years. He has ascites and is constantly belching. Even tho I buy low sodium soups and food items, he still cheats while I'm at work and eats, salted peanuts, pretzels, etc. He cancelled his last drs. appt. and I am concerned being his stomach is bloating again and he is tired all of the time, but can't get a good night's sleep. What is the corelation between the damaged liver and excess sodium?

1Shelly1
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   Posted 2/25/2008 10:50 AM (GMT -7)   
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

Pink Grandma
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   Posted 2/25/2008 1:39 PM (GMT -7)   
Welcome to HealingWell Angiesmommy. Shelly did such a good job there's really nothing to add.
Take care and come back anytime.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Butterflythree
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   Posted 2/26/2008 8:18 PM (GMT -7)   
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
Butterflythree
 
There is always hope!


angiesmommy
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Date Joined Feb 2008
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   Posted 2/26/2008 8:58 PM (GMT -7)   

  Thank you ,Butterflythree and all! I feel very comfortable and welcomed here at this forum.

 Butterflythree, I have to ask you if your husband has cirhosis and if he has had problems with belching alot? My hubby just wants to sleep now; has no appetite but drinks V-8 (not low-sodium), but like Shelly has, we cannot make decisions for our loved ones; we can only guide them and pray that they make the right decisions. SO frustrating at times!


Butterflythree
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   Posted 2/29/2008 5:13 PM (GMT -7)   
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.
Butterflythree
 
There is always hope!


angiesmommy
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Date Joined Feb 2008
Total Posts : 18
   Posted 2/29/2008 5:19 PM (GMT -7)   
Oh, that's okay...i'm glad you wrote back! My hubby won't go see the dr. because he is continuing to smoke against the drs. wishes, and he KNOWS he will not be eligible for a transplant until he is sober and cigarette-free for 6 months. Personally, I don't think he's going to make it to see the transplant. He is weak and can barely keep water down without throwing it up. I beg him to let me take him to the drs., but he doesn't want to go. A death wish? I don't know what goes on in his mind at times...I just keep waiting for him to start bleeding from his banded varices and THEN I'll call ER. You can lead a horse to water....

Butterflythree
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   Posted 2/29/2008 6:04 PM (GMT -7)   
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.
Butterflythree
 
There is always hope!


angiesmommy
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Date Joined Feb 2008
Total Posts : 18
   Posted 2/29/2008 6:20 PM (GMT -7)   
 Oh, my dear Butterflythree, I will be praying for you as well! I am working part-time because I want to be with my husband as caregiver when I can. He NEEDS me, and I need him! And to think i was selfish enough to want a divorce at one time because of this dreaded disease....
 What exactly is encephalopathy? Sounds like it has something to do with the brain or head....
                                               BIGGGGGGG HUGS TO YOU!

1Shelly1
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Date Joined Oct 2007
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   Posted 2/29/2008 6:26 PM (GMT -7)   

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


angiesmommy
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Date Joined Feb 2008
Total Posts : 18
   Posted 3/1/2008 8:36 AM (GMT -7)   
I agree wholeheartedly, Shelly! It's as if the end is near, so why bother? But there IS still hope for him! Big sigh.
Funny thing, he kept down a taco last night, but can't keep fluids down (or in). He had a bowl of cereal nd the milk went right through him. Does anybody know if there is a nutritional drink out on the market that is low sodium I could try him on?

Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 3/1/2008 9:57 AM (GMT -7)   
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
 
There is always hope!


Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 3/1/2008 9:59 AM (GMT -7)   
Angiesmommy, See the post titled "Encephalopathy Education". Shelly really does a great job explaining it.
Butterflythree
 
There is always hope!


angiesmommy
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Date Joined Feb 2008
Total Posts : 18
   Posted 3/1/2008 11:08 AM (GMT -7)   
 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?

1Shelly1
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Date Joined Oct 2007
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   Posted 3/1/2008 11:55 AM (GMT -7)   

Angiesmommy, it is pretty common for people with liver disease to have that "sweet smell" to their breath. Is he a diabetic too?

 Shelly


CHILI
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Date Joined Feb 2008
Total Posts : 13
   Posted 3/1/2008 12:45 PM (GMT -7)   
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

Butterflythree
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Date Joined Oct 2007
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   Posted 3/1/2008 1:01 PM (GMT -7)   
Angiesmommy, My husband was found to have grade 2 varices in October 2006. He hasn't had the need to get them banded yet. He should have had another endoscopy done by now but the doctor's won't do it because he lost his insurance. It does sound like your husband is experiencing encephalopathy. Does he take lacatulose? If not you should talk to his doctor. It can help alot.
Butterflythree
 
There is always hope!


Barclay109
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Date Joined Mar 2008
Total Posts : 5
   Posted 3/4/2008 8:05 PM (GMT -7)   

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

Pink Grandma
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Date Joined Nov 2006
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   Posted 3/5/2008 12:54 AM (GMT -7)   
Hello Leslie and welcome to HealingWell. So sorry to hear about your father. But he certainly has a wonderful daughter to take care of him and your mom. I agree this is a great forum for information and support. We have a such wonder members.
Hopefully we can help you through this roller coaster journey. So stick around and post when ever you like.

Take care. :-)
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


angiesmommy
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Date Joined Feb 2008
Total Posts : 18
   Posted 3/5/2008 8:32 AM (GMT -7)   
 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 :-)

1Shelly1
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Date Joined Oct 2007
Total Posts : 502
   Posted 3/5/2008 9:14 AM (GMT -7)   

angiesmommy, the bluish leg is usually caused by poor circulation and is often associated with swelling of the leg or legs.It can be from a number of causes such as a clot, obesity (causing vaicose veins), injury, or swelling (edema) to name a few. In the end stages of some diseases the organs begin to fail. The brain reroutes what it needs to survive and will sacrifice circulation to the extremities (usually legs first) to keep the blood circulating in the upper part of the body. If the bluish/purple area is cool or cold to the touch it is pretty safe to assume it is a circulation problem. The brain will sacrifice anything to keep itself alive. I have tried to explain a very complex medical situation in terms that we can all understand so I know it sounds rather simplistic the way I have decsribed it here. If you just remember that the brain dictates everything and will save itself first that may help a little. It is so traumatizing for family to see such awful physical deterioration of a loved one that there is no explanation that will take it away or fix it. I truly wish that we could fix these things. But sometimes knowing what is causing it does help us to understand the process. To some degree it takes a little of the fear away I guess. I have always maintained that the NOT KNOWING is worse than knowing. At least that is my opinion.

Leslie, welcome to the forum. We are here for you. The people that participate in this forum are absolutely wonderful, compassionate, and intelligent. They will be able to answer questions or direct you  to a source that can. I am so sorry about your dad and mom. Sometimes it just doesn't seem fair does it? You are a wonderful daughter and I know that both of your parents love you very much and are proud of you. You will all be in my prayers. 

 Shelly


Butterflythree
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Date Joined Oct 2007
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   Posted 3/5/2008 9:18 PM (GMT -7)   
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.
Butterflythree
 
There is always hope!


Barclay109
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Date Joined Mar 2008
Total Posts : 5
   Posted 3/5/2008 9:41 PM (GMT -7)   
Thanks everyone for your warm welcome and support. It means so much. Inspite of all my Dad is going through mentally and physically, he sat down and did his taxes today. He's putting up a good fight.

Shelly, thanks for the explanation above - it's appreciated. I agree, I'd rather know than not know. It is definitely scary at times, tho'.

Butterflythree - I can see that this forum is a warm and welcoming place. Just wonderful.

Hi to Pink Grandma and angiesmommy - thanks for your nice welcome, also.

Hope you all have a wonderful day tomorrow. Sleep tight!

spiritwalker
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Date Joined Mar 2008
Total Posts : 1
   Posted 3/9/2008 6:01 PM (GMT -7)   
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.
Barbara


Pink Grandma
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Date Joined Nov 2006
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   Posted 3/9/2008 7:02 PM (GMT -7)   
Hello Barbara and welcome to Healingwell. I am so sorry that you have to go through this. The answer to your question is yes...........it can get worse and it will with him still drinking. Even a little to too much. I am going to try to find an older post on what may or may not happen with him. Everyone has slightly different symptoms but their all parallel each other.
Stick around we have a wonderful group here. Take care...........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

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