We have lived with your Father's symptoms for over a year with hepatic encephalopathy and have learned a great deal on how to try and control it. My husband has had the best doctors at UCLA and the balance of lactolose and amonia levels can and is very tricky. We kept my husband on a very low salt diet by preparing everything we could at home to try and prevent the confusion. Just as important is the amount of bowel movements each day to keep the overall amonia level down. Our doctors recommend 2 to 3 loose stools a day to keep things in check.
My husband is in late stage liver disease and we have Hospice helping us at home. Make sure he gets all the tests needed on a regualar basis since the liver condtion can change so quickly. Good luck with a transplant and I pray he gets one, my husband had many other issues and did not qualify.
Yep.Have him drink lots and lots of enulose..I went through 64 bottles taste like ****..but really helps the ammonia bit..Kind of is like Karo syrup realy..Hope this helps....
Thanks, LvdByGod, for your encouraging words. You are absolutely right about the msg in the Chinese food-that probably played a big role in his decline. Daddy has had one transplant evaluation already about 3 weeks ago and it was found that his liver was functioning and he didn't need the transplant. But, because of the 2nd episode with HE this week, he will be re-evaluated on Monday. His drs are great and aren't wasting any time getting him in. His first eval showed that he was an "8" on the scale of transplant need and you have to be at "24" to be placed on the list. The specialists really didn't forsee this happening again because of the rigid diet and regular lactulose use that my mother has had him on. This time was a real shock for us. Thanks again for the information!
ausmor, i am so sorry to hear about your dad...makes me so sad...i had a similar thing happen with my mom...only her drs didn't do anything for her and later she passed away...she was an alcoholic early on and stopped drinking 35 years befor she died of cirhosis and liver cancer from the cirhosis...sometimes i guess the liver disease can progress even without the main trigger that started it to die in the first place...
i'm not sure about the alcohol in the chinese food,unless it wasn't cooked through...if it was cooked i would think it would have burned off the alcohol and left just the flavor...
unless in the "splurge" he snuck some saki...but, i bet the salt in it had a greater impact than the cooking wine...or perhaps even the fat? this is my best guess but i'm not sure.
either way it's good to hear he will finally be evaluated for a transplant...has he also had a biopsy to see the condition of the liver? and other tests to rule out other liver problems?
make sure you educate yourself on these issues cause then you can make sure he's getting the help he needs...and you both can ask important questions and comments to the drs...
also try to see a "hepatologist" at this stage in the disease...(dad's at a crucial point)...try also to find out if he has any other possible reasons for continued disease progression...like fatty liver, too much iron, hepatitus a,b,c,...or hidden alchohol use...and keep a watchful eye on his labs...of course the hepatologist "should" be doing all this...but our nudges to the drs never hurt...and it keeps them on task...
don't let the drs put off his evaluation for the transplant. i think enchalopathy is an one of the indicators for getting on the list ... also keep in mind living donation as a possible hope...
my prayers are with you and your dad...please let us know how the evaluation turns out...
some good web sites to check into, must cut and paste.
~Pre-Transplant Evaluation~
http://www.surgery.usc.edu/divisions/hep/patientguide/pretransplantevaluation.html
~MELD Calculator~
http://www.unos.org/resources/MeldPeldCalculator.asp?index=98
~this is a great site with others going through cirrhosis and seeking support for themselves or others~
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~to Learn more about Liver Transplants~
http://communities.msn.com/CirrhosisSupportGroup/transplants.msnw
~to Learn more about Liver Disease~
http://communities.msn.com/CirrhosisSupportGroup/cirrhosisinformation.msnw
hope you will keep in touch with us as well...
God's blessing to you and your dad.