Hepatic Encephalopathy

Hepatic Encephalopathy = Hepatic encephalopathy is a worsening of brain function that occurs when the liver is no longer able to remove toxic substances in the blood.   Here is an excellent website that describes the causes, symptoms and treatments . . . https://health.google.com/health/ref/Hepatic+encephalopathy   If you or a loved one is experiencing ESLD (End Stage Liver Disease) symptoms, you are already very familiar with this term.   You must understand how to manage this condition and know the dangers associated with it.   If left untreated, the patient can slip into a hepatic coma in which 80% (8 out of 10) of individuals will not recover.   This is where you confront the disease eye-to-eye and toe-to-toe.     You’ve heard the phrase, “It’s the ALCOHOL talking”, which is used to describe an individual that is acting completely out of character due to the influence of alcohol.   Well, when referring to the effects of encephalopathy you could say, “It’s the DISEASE talking”.     How do I know?   I know because I’ve lived it.   My husband slipped into a hepatic coma twice while he was hospitalized for more than 75 days waiting for a transplant.   He suffered malnutrition and muscle wasting due to a lack of appetite, inability to swallow, diuretics, and protein restrictions.   He went from 185 pounds on a 6 foot frame to a mere 125 pounds in a period of less than two months.   This was encephalopathy at its worst.     Of course I dealt with the more subtle symptoms leading up to these events.   The mood swings, acting out of character, nasty temperament, incoherence, staggering and stumbling, and a stubborn attitude.   This went on for a couple of years before he finally received a liver transplant.   All of these are symptoms of elevated blood toxins due to the failing liver’s inability to function properly.   It’s not just an ammonia build-up.   The medications necessary to treat a patient’s ESLD symptoms will also build to toxic levels in the blood stream.   It’s the catch 22, the double edged sword, and a very fine line to walk.   Persons experiencing encephalopathy SHOULD NOT DRIVE under any circumstances!   They are not only a danger to themselves but a danger to the general public.   My husband was a truck driver all of his adult life.   Taking his keys away was difficult but it had to be done.   God forbid he get out and run over a child and rob him or her of life.   This is non-negotiable!   My husband and I had many, many frank discussions about his limitations due to his disease.   Since his transplant, he resumed driving.   He loves the independence and has earned the right.   He is even driving our motorhome.   Aside from Harvey ’s fanatical will to live, I believe what saved him was his PEG or feeding tube.   He could no longer swallow due the scaring from the esophageal varices and banding procedures to resolve them.   He became malnourished and was wasting away.   He had no appetite and would refuse his medications.   Prior to the swallowing issue, just trying to get him to drink and Ensure was a chore.   This is common in many ESLD patients.     The PEG tube (installed through the abdominal wall directly into the stomach) or a J-PEG tube (which extends into the small intestine) is invaluable in treating an ESLD patient.   It’s a surgical procedure with a quick recovery.   With proper care, the risk for infection is minimized.   The PEG tube allows a caregiver to provide the necessary nutrition and medications that will prolong life in anticipation of a liver transplant.   It reduces the stress on the caregiver and the patient.   No more drama.   All medications are given through the tube as well as a formula designed for the patient’s needs.   No more swallowing meds, no more tasting Lactulose, Potassium, and the like.   If the patient has the ability to swallow, they can eat at will.   This does not impede the patient’s ability to eat normally.   It is truly a blessing.     I could tell you about many occasions where the PEG tub proved invaluable, but I’ve rambled on long enough for now.   Since Harvey ’s transplant, he is now eating normally.   Removing the PEG tube is an in-office procedure within a month after his liver transplant.   They simply pulled it out with force.   There was no pain.   The hole in his abdomen healed quickly.   I don’t know what the insurance restrictions are, but I can assure you it is worth inquiring about .   It made all the difference in Harvey ’s care.   Harvey will be 65 years old in June.    I hope this helps.   Penny

Thanks for the post, good information to know and there are probably many people here that find it useful. Good luck to you and your husband, wish you the best.

Certainly, everyone needs protein.  It's the form it's in that can cause problems.  Americans in general eat way too much red meat.  As we know, it's the most difficult protein for the liver to process, and especially a diseased one.  But protein is available in many forms.  I have 3-Bean Chili on the stove.  Completely vegetarian, but loads of protein from the beans.  I now prefer it over chili with meat.

Hugs,

Connie

uhhhh if u put ur hubby underwear on and start strutting... not to worry... my guy modeled my bra and big elephant undies one day for my.... and I was typing on the forum when he did... he was so proud of himself... a big grin on his face ...ear to ear... all that to cover his "man boobs"... Sandi

I too am all of the above. At my last GI visit the Dr. put me on this new medicine Xifaxan it is strickly for HE. It clears the brain of toxins plus I take lactolose. I'm still trying to find out more about this new medicine. It does not come in generic form and cost $1,400/month. Has anyone else heard of it?

Post Edited (Imp36) : 10/24/2010 5:42:20 PM (GMT-6)

"I believe the reason for xifaxin isn't to clear your brain of toxins. It clears your digestive tract of bacteria, because they hamper your body ridding itself of ammonia."

David is correct.

Hugs,

Connie

Hey Suzy, Salix has a website and you can download patient assistance forms. If you/he meet the criteria the medicine is free in 90 day renewable prescriptions without reapplying. They deliver straight to your door at no cost. I'll look for the link and post it later.


Ziff

suzyq0454:

You responded to a really old post. I copied your remarks into a new thread. Just click HERE:

www.healingwell.com/community/post.aspx?f=25&r=n


ALL: I've locked this older therad and encourage you to post replies to suzyq in the new thread.

Mama Lama