3. What is Hepatic Encephalopathy?
Hepatic Encephalopathy (H.E.) happens to
some people who have cirrhosis (sir-o-sis)
of the liver—a serious liver disease.
Our bodies make toxins—harmful
chemicals—when we eat, drink, or take
medicines.
One of the jobs of the liver is to filter these
toxins, especially ammonia, out of the body.
When the liver is not working as it should,
sometimes it allows toxins to stay in the
body.
A buildup of these toxins can cause changes
in the brain—H.E.
4. Who has HE? How common is it?
Common causes of liver cirrhosis
include:
Hepatitis C virus
Alcohol abuse
NASH (fatty liver disease)
About one million people in the U.S.
have cirrhosis of the liver (regardless
of its cause)…
…and as many as half of them either
have or will have H.E.
5. What are HE’s effects?
People with HE may have
PHYSICAL CHANGES, such as:
• Problems with balance
• Shaky hands
• Feeling more tired than usual
• Slow or sluggish movement
• Different sleep pattern—you may be
up at night, sleeping during the day
• Sweet or musty smelling breath
6. What are HE’s effects?
People with HE may have MENTAL CHANGES--
they’re “just not right”. They may be:
• Tired all the time
• Very forgetful or confused
• Unable to speak or write clearly
• Very drowsy and not easy to wake up
• Acting oddly—“not yourself”
• In a bad mood—irritable
• Prone to wander or easily get lost
7. What kind of things can bring on H.E.?
Symptoms
of H.E. can
happen or
increase for
no obvious
reason…
8. What kind of things can bring on H.E.?
…but there are some TRIGGERS that can bring it on.
CONTACT YOUR MEDICAL TEAM if any of these TRIGGERS happen:
• Fever
• Dehydration—the body is “dry” from not
having enough fluid on board
• Bleeding anywhere in the gut
• Infection
• Constipation
• Not taking your medicines for any reason
• Not eating for any reason
• Drinking alcohol
9. What is HE’s impact on people?
H.E.’s impact on patients and their families
can be DEVASTATING.
Here are some of the names they’ve given it:
•LIAR
•THIEF
•MONSTER
16. Who should be on the H.E. team?
1. Find the Wingman.
17. Who is the Wingman?
The Wingman is someone who knows the
H.E. patient, cares about them, and will watch
out for them while they have this illness.
18. Why have a Wingman?
Since the H.E. symptoms can return
anytime, it is crucial for these patients to
have someone who can keep tabs on them
at all times.
19. Why have a Wingman?
People with H.E. cannot make it alone.
20. Who should be on the H.E. team?
2. Get proper medical care.
22. Proper Medical Care
--The H.E. patient’s doctor and staff must be
both willing AND able
Willingness: Will
actually take on the
care of a patient with
H.E.
Ability: knows and
understands people
with H.E.; good
communicator
23. Who should be on the H.E. team?
3. Your own positive attitude!
24. What do we need to know?
You can do this!
Yes, it’s a tough fight, but--
25. What do we need to know?
Now that you’ve built your team, it’s time to
make your plan for living well with H.E.:
1. Family Meeting
2. Regular medical followup
3. Fuel for the Journey
4. Consider Liver Transplant
as a treatment option
26. What do we need to know?
Things to discuss at the FAMILY MEETING
might include:
Full Disclosure
-the past
-the present
-the future
Who is the Wingman?
Team member
responsibilities
Sick day plans
27. What do we need to know?
Fuel for the Journey:
• H.E. challenges patients
and their families like nothing
else!
• It can be incredibly draining
on resources: time, finances,
emotions
• No one can really
understand unless they’ve
“been there”
• You have to find fuel for the
journey
28. What do we need to know?
Where to Fuel Up:
1. Remember past successes
2. Care for each other—chronic
illness can place tremendous
stress on all involved
3. Find kindred spirits—in a
transplant support group
-acceptance & understanding
-how do you do this?
30. What do I need to do about H.E.?
• Take a drug called Lactulose
Lactulose is a medicine that is very sweet, like sugar.
Lactulose combines with the toxins of H.E. and clears
them out by causing extra bowel movements (BMs).
Most people don’t like having lots of BMs! But having
them is the best way to keep the body free of the toxins
that cause H.E.
Lactulose will clear your body of all those toxins. It can
be the difference between staying well and going to the
hospital.
Take enough Lactulose to cause 3 to 5 BMs per day.
Once you’ve had more than 3 BMs, stop taking Lactulose
for the rest of that day. Start taking it again the next
morning.
If you have taken all the Lactulose that was ordered,
and you’re still “not right”, CALL YOUR MEDICAL
TEAM.
31. What do I need to do about H.E.?
• Take a drug called Xifaxin (Zy-FAX-in), also called Rifaxamin.
o This is another medicine that will help to clear out the toxins that
cause H.E.
o You may need both Xifaxin and Lactulose.
o Xifaxin can be expensive, even with insurance. Call your
medical team if this is a problem for you.
• Follow the special diet given to you by your medical team.
• Call your medical team if you have any of the physical or mental
changes listed above.
• Call your medical team if you have any other problems such as a
fever or a new pain.
• You must follow all the medical team’s orders. This may include
medical tests, other medicines, followup visits to the doctor’s office,
and changes in your diet.
32. What do I need to do about H.E.?
• As you undoubtedly
have noticed by now…
• …good, frequent two-
way communication
between your team and
your medical team is
ESSENTIAL!
33. It is important that you do all of this because
H.E. is a serious medical condition.
If not cared for properly, H.E. can cause many
problems, such as:
• Car crash with injuries to you
or someone else
• Wandering off, getting lost
• Passing out
• Coma, even death
34. Putting it all Together
H.E. is a serious medical condition. It can lead to severe
illness, coma, even death, if not cared for properly.
Your life can be better, but only if you:
1. Find your wingman!
2. Get proper medical care, and
3. Follow the orders from
your medical team
35. Call your medical team
about any of these 3 things:
1) If you cannot take enough Lactulose to have at
least 3 BMs every day
2) If there are any changes in your condition
3) If any of the H.E. triggers happen
36. Remember these 3 things about H.E:
1.H.E. is a serious medical
condition, which can result in
injury, hospital stays, and even
death if not cared for properly.
2. H.E. will not get better on its
own, without the right medical care.
3. The life and health of these
patients can be improved IF they
take their medicines and do the
other things ordered by their
medical team.
