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hepatic encephalopathy -- should we be forcing the doctors to do more?

We had an HE attack starting Monday night.  It's now Wednesday night.  I suspect it's tied to kidney failure or at least decreased kidney function, since this was proceeded by a botched attempt to increase his diuretics by our hepatologist.  BUN 74.  Creatinine 1.5.  Ammonia 243.

But they checked us out at the hospital and just sent us home with orders to do lactulose four times a day.

After reading around this forum, ammonia 243 seems SKY HIGH.

He's very confused.  Fixated on the idea of sleep, but can't let himself sleep because he keeps trying to get out of bed.  He's very worried about poop accidents because of the lactulose, so much that it's also interfering with sleep.  He can't type / use his smart phone.  Can't read a clock.  Etc. etc. etc.

Should we go back to the hospital and MAKE them admit us?  (I'm heavily leaning toward YES.)
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5611452 tn?1370971104
I've been following your posts.  I just wanted to let you know that you are all in my thoughts and prayers.  I'm sorry you are all going through this.

Shelley
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Avatar universal
Hector,

You were very right, the transplant center was the right place to call.  They actually got us in very quickly to see his doctor, I think mostly to reassure us caregivers and answer our many questions.

As for adult diapers ... yes, we've been using them for a couple weeks and I think he's coming around to appreciating their usefulness.

And you are very right about this being a learning process.  I hate it.  Learning every day what is going wrong next, not knowing if this is the point where we just cascade into total system shutdown .... it's terrible.  I don't know if we have weeks or months left.

As usual, I'm wishing you the best with your own situation.  Thank you.
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Avatar universal
Yes, ESLD is a terrible disease. I'm sorry that this is happening in your family. I hope the hepatologist will be able to manage his symptoms.
Advocate1955
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Avatar universal
Advocate1955,

You remember correctly, he *is* being seen at the Swedish transplant center.  And you and Hector were both right: calling the liver transplant center turned out to be the right thing to do.

You're lucky not to have to deal with HE!  The episode was extremely scary to all of us as caregivers.  It was like seeing him develop Alzheimer's overnight.

We keep a journal of food ... and now we've started tracking meds too ... and we may have to start tracking kidney function and urination if his kidneys look like they're going to start failing.

I hate this disease.  It's so cruel.
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Avatar universal
I can't really advise you because I don't have first hand experience with HE.  Hector has given you some great advice.  I would call the transplant center.  If I recall correctly, he is being seen at Swedish Medical Center in their new liver transplant center.  I would call his hepatologist's nurse in the transplant center and ask her what to do.  Regular emergency room doctors may or may not do the right thing or treat him correctly, since they are not hepatologists, although obviously if you are not able to manage the symptoms at home (if he becomes violent, if he goes into a coma, if he has seizures, if he isn't compliant with his diet and medication) then you would need to go to the ER most closely associated with his transplant hepatologist (Swedish's ER).  From what I understand, there are so many things that can trigger a HE episode, and much has to do with the balance of fluids, diet, and medication.  Try not to worry too much about the ammonia levels per se, focus more on the symptoms and communicating with the nurse about managing the symptoms.  I wonder if it would help to keep a daily journal of things like intake, output, and symptoms?
Advocate1955
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446474 tn?1446347682
COMMUNITY LEADER
The first thing every patient seeing a hepatologist should do is call the transplant center or liver clinic and talk to the nurse about whatever issues the patient is having. All treatment should be known by the transplant center because other hospitals who are experienced with treating cirrhotic patients can give the patient treatment that could worsen or even be life-threatening to a cirrhotic. If a patient is on the transplant list they are required to notify the center of any medical issues the patient has.
Most if not all TP centers have nurses on duty 24/7 become patients with cirrhosis have issues arise from time to time and the nurse know how a person with cirrhosis should be treated unlike most local hospitals. If you are near the transplant center you should still call the nurse to find out if you should go to their ER.

By the way HE is not diagnosed by ammonia levels. Not all patients with HE have high ammonia levels. It is diagnosed by observation as it is a Hepatic encephalopathy is defined as a spectrum of neuropsychiatric abnormalities in patients with liver dysfunction, after exclusion of other known brain disease. Hepatic encephalopathy is characterized by personality changes, intellectual impairment, and a depressed level of consciousness.
Hepatic encephalopathy is the second most common reason for hospitalization of cirrhotic patients in the United States. Hepatic encephalopathy is also the most common, possibly preventable, cause for readmission.

What they will do at the hospital assuming they understand enough about cirrhosis and liver disease to properly treat it, is look for what caused the HE episode and make sure the issue is resolved. (see below for triggers of HE). Then they will give him Lactulose enemas until he is cleaned out and passes food quickly enough not to have the toxins build up in his bowels.

Of course we are all embarrassed by being not able to control our body functions as adults, that we have controlled since potty training. This is life with cirrhosis I'm afraid and we all come to term with it at some point and learn to live with it because controlling HE is vital to our general feeling of well-being and because servere HE can lead to coma and death.

When I was in the hospital once I had to have male nurses carry me and put me on the toilet and watch me try to defecate so they could look at what if anything came out. At first it was difficult but by the second day... hey what are you gonna do? You learn to accept it and realize these nurses have seen everything and this doesn't phase them. Believe me there are plenty of worse thing about advanced cirrhosis than not being able at times to manage defecation. In time the use of Lactulose becomes second nature and you don't even think about it. I have been using it daily for 4 years now.

Of course if you can't manage his HE at home then go to the hospital AFTER calling the transplant center or liver clinic and talking to the nurse.
Obviously if someone is in a HE coma call 911.

In practical terms if he is worried about not being able to control his bowel movements and I don't know anyone with HE who hasn't had accidents, he can use adult diapers that you can buy at any drug store. They work and prevent accidents from not reaching the toilet in time! So if that is a concern buy the disposable adult diapers (they come in cool patterns too so the patient can be stylish while doing their business so to speak).

The basics of HE:
HE occurs when the liver is damaged and cannot remove toxic chemicals, such as ammonia, from the blood. These chemicals then enter the brain, affecting both the mental and physical condition of cirrhotic patients. Episodes of HE often result in hospitalization, and without treatment, patients remain at high risk for recurrence.

The following factors may trigger HE:

Dehydration (loss of water from the body)
Low oxygen levels in the body
Eating too much protein
Constipation
Medications that affect the nervous system, such as tranquilizers or sleep medications
Infections
Intestine, stomach, or esophagus bleeding
Kidney problems
Surgery

HE can cause mental and physical symptoms. They can vary person to person, and may progress slowly or occur suddenly.

Symptoms may include:

Mild confusion
Forgetfulness
Personality or mood changes
Poor concentration
Poor judgment
Stale or sweet odored breath
Change in sleep patterns
Worsening of handwriting or small hand movements
Severe symptoms may include:

Unusual movements or shaking of hands or arms (also known as “flapping”)
Extreme anxiety
Seizures
Severe confusion
Sleepiness or fatigue
Severe personality changes
Jumbled and slurred speech
Slow movement
Stupor
Coma


Best of luck. Hang in there. This is all a learning process. It all takes time and we all do the best we can with what we now at the time.
Hector
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