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Liver & Pancreas Disorders Message Board


Liver & Pancreas Disorders Board Index


sorry for all that you are going thru there. unfortunetly it could get even worse for you. if you have not yet done so, just considering what you have stated here as to his behaviors and changes, you really do need to speak to a lawyer(and his doc) about possibly being able to just kind of take over his decision making capabilities in certain ways? do you know what i mean? god only knows, with the escalation of his ammonia what he may do next ya know? you just need to really protect him and yourself from any possible really BIG decisions he could make right now that could have some serious ramifications. i know that part would be hard, but it is something you may need to put into action ya know? just something to think about.

is there ANY family or friends that could possibly consider doing a live donar type of transplant for him? this would at least make things possibly happen a bit more quickly if it could be done this way. just an option for you.

i was kind of suprised to see that UNOS actually changed what used to be at least one year of full sobriety before they would consider placement. interesting. sorry i cannot help you more than this. but i seriously wouldf consider what i mentioned above before he makes some really serious type of decisions here that could really really complicate your life or devistate you. you kind of have to be looking out for your best intersets right now as well as his. if things become too out of hand there for you you may have to consider other options for where he may have to live? just something, depending upon how severe this gets that may also be needed. just trying to rid his body right now as much as possible of that ammonia really is about the most critical thing to make sure gets done. in some cases,depending upon how high it has been and for how long,any brain affectation just "could' possibly become a more permanent typeof issue to have to deal with. this unfortunetly is just what ammonia does to our brains in high amounts. my heart goes out to you hon, and i do hope something good will help to change the current circumstances you are having to deal with right now. just do whatever you really feel in your gut is the right things to do right now. and i would seriously at lkeast consult with a lawyer about his mentation issues and decision making capabilities. this could be downright dangerous too to him and to you too ya know? please keep me posted on all things. do you yourself have a good support system in place? if not, ask the hospital or his doc about the possible groups they may have availiable in this type of situation. you just need a place where people really understand things that are rather unique to this type of situation. hopefully you do have that much needed support for you. please let me know how things are going. take care hon. Marcia
nunyabe: I'm so sorry to read about your situation. I just lost my dad to liver disease. He had high ammonia levels for quite a long time before he died, and this eventually caused him to die. They went up and down, kind of like a bouncing ball. He would have weeks where he was very alert, but then would have periods of a few days where he was very confused. Fortunately he was never mean, but it was hard to watch nonetheless. He was nothing but the sweetest, most grateful person, which was really sad because there was nothing we could do to help him, even though we believed he deserved everything in the world. I would say this happened for about 3 years, with a gradual downward trend. It seemed like the ball would bounce back up, but never quite as high as it had been before. Toward the end he became comatose. There is no treatment for this. Dialysis does not do any good, and there is no type of "liver dialysis" available. Lactulose is really the only treatment for high ammonia levels. Eating a low protein diet can help keep the levels lower. Breakdown of protein (especially animal protein) in the intestine causes high amounts of ammonia. This is why flushing the intestines out with the lactulose helps treat the high levels. Feelbad is right that loose stools are a good sign that the ammonia is being flushed out. It is incredibly hard on the caregiver though.

I really hope that you are able to get on the transplant list. This is really the only thing to do at this point. Most of the symptoms can be managed, but ammonia levels are probably one of the toughest symptoms to treat.

I agree with feelbad that a support group or some other type of support is going to be very important for you. For one, caregiving in general is extremely hard. Secondly, the fact that your husband is being mean must be very hard to tolerate while still providing him good care. Lastly, I don't think you want your final time with your husband to be one of super high stress for you. I think it would be best for both of you if you were able to get some support and feel that you had some control over what effect this was having on your life. Hopefully, he will get on the transplant list and you won't even have to worry about this for a long time. I am wishing the best for you.





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