1. 2014 MFMER | slide-1 Living Well With Hepatic Encephalopathy
David Cox, RN, BSN, Staff Nurse, Transplant Unit Mayo Clinic
Hospital Jacksonville Transplant Education Forum August 16,
2014
2. Living Well with Hepatic Encephalopathy
3. What is Hepatic Encephalopathy? Hepatic Encephalopathy
(H.E.) happens to some people who have cirrhosis (sir-o-sis) of the
livera serious liver disease. Our bodies make toxinsharmful
chemicalswhen 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 brainH.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 HEs 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
patternyou may be up at night, sleeping during the day Sweet or
musty smelling breath
6. What are HEs effects? People with HE may have MENTAL
CHANGES-- theyre 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 oddlynot yourself In a bad
moodirritable 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 Dehydrationthe 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 HEs impact on people? H.E.s impact on patients and
their families can be DEVASTATING. Here are some of the names
theyve given it: LIAR THIEF MONSTER
10. What is HEs impact on people?
11. What does any of this have to do with Living Well?
12. H.E. poses a real challenge for sure It may seem like the
bridge to living well is out, but
13. the statement is still true! People CAN live well with
H.E.
14. but its going to take a TOTAL TEAM EFFORT to get
there!
15. Who should be on the H.E. team?
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.
21. Proper Medical Care --The H.E. patients doctor and staff
must be both willing AND able
22. Proper Medical Care --The H.E. patients 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, its a tough
fight, but--
25. What do we need to know? Now that youve built your team,
its 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 theyve 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 otherchronic illness can place
tremendous stress on all involved 3. Find kindred spiritsin a
transplant support group -acceptance & understanding -how do
you do this?
29. What do we need to know? Knowledge is Power!
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 dont 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 youve 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 youre 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
teams orders. This may include medical tests, other medicines,
followup visits to the doctors 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.
