Yes, sleeping too much or not being able to sleep consistently (being awake all night) can be symptoms of HE. I am glad his doctor is on top of that and made the recommendation. Please keep in mind that in order for the lactulose to work most efficiently, the patient must have from 2 -4 bowel movements per day. That number of bowel movements indicates the the GI tract is keeping things moving along and prevents the build up of toxins like ammonia in the GI tract which causes the HE.
I'm sorry to hear that it appears he won't be able to cure his hep C until after transplant. Once he gets a new liver curing the hep C is relatively easy as cure rates are very high - 94%+. I also had to wait until after my liver transplant to be cured after treating twice before transplant and failing both treatments. Now my new liver is hep C free thankfully.
It is not uncommon to have to wait until drug and alcohol free for listing. Be aware that once he is listed they can also perform random testing for drug or alcohol use at any time while listed. He doesn't want to get de-listed while he is waiting for a liver and getting sicker.
Hang in there.
Getting a transplant is a marathon not a sprint. Many of us have done it and are very glad we got through all the waiting and recovered our health and our lives. Liver transplant is truly a life-saver. I just celebrated my two year anniversary of my transplant Monday.
Hector
Dr increased his dosage of lactalose. He said he thinks his sleeping so much is from the ammonia build up as you mentioned to me. We met with transplant social worker showed her all the proof of him going to treatment programs (since he tested positive for marijuana), so hopefully within 6 months we will be able to be listed. His MELD score is still at an 11 which is good, we don't want it going up while he's not even listed yet. At this point they consider him stable but still believe transplant is the answer for long term as they don't feel they will be able to cure hep c until he has a new liver.
Also his sleep patterns are messed up as u mentioned he sleeps all day and can't sleep as well at night.
I'm not sure what stage of HE he would be considered in but he for sure has mental confusion and has had inappropriate behavior outbursts. Since Tips he's not had an episode like this tho. We suspect he's had HE going on a lot longer than what we thought because my husband use to be a very sweet easy going passive man, never hardly said a cuss word and about 5 years ago he became a different person I mean totally different. Awful rage, terrible cussing and NO patience with anyone or anything. Since being brought to our attention he's done much better and also since being put on lactalose and xifran.
He also has the jerking but can for sure still do basic math and things like that.
Knowing the signs of hepatic encephalopathy (HE) can help control and slow down the symptoms of HE before it gets worse. Let your doctor know if your loved one is beginning to show these signs or has shown them before.
Mental signs of HE:
* Forgetfulness, mild confusion
* Poor judgment
* Being extra nervous or excited
* Not knowing where they are or where they're going
* Inappropriate behavior or severe personality changes
Physical signs of HE:
* Breath with a musty or sweet odor
* Change in sleep patterns (often awake at night and sleeping during the day)
* Worsening of handwriting or loss of other small hand movements
* Movements or shaking of hands or arms
* Slurred speech
* Slowed or sluggish movement
What are the Stages of hepatic encephalopathy (HE)?
Stage 1 - Mild hepatic encephalopathy
Patients may have sleep problems and trouble concentrating. They may have severe mood swings. Their hands might shake and they may have difficulty writing.
Stage 2 - Moderate hepatic encephalopathy (HE)
Patients may not have much energy. They keep forgetting things and have problems with basic math. They may behave strangely and slur their speech. May have "asterixis" jerking movement of hands or arms. The tell-tale sign of HE.
Stage 3 - Severe hepatic encephalopathy (HE)
Patients are very sleepy and sometimes pass out. Strange behaviors. But they can be aroused. May have "asterixis" jerking movement of hands or arms.
Stage 4 -Final stage
The final stage of hepatic encephalopathy is coma, unresponsive to pain—the patient is unconscious and can't be aroused.
This is a medical emergency.
Call 911 or take him to the nearest Emergency Room!
Talk to his doctor and learn the signs of HE so you can better help him manage his HE.
Take care.
Hector
Hi Hector thanks for your reply :-)
Yes he is on lactalose for his HE management and also a pill called "xifran". He has just recently been diagnosed with having HE in the last 6 months. So far after tips his mind has been thinking mostly clear, sometimes he may repeat himself or ask the same questions. Not all the time though. I'm just not sure what to look out for as far as him going into a coma?
I am glad you will be seeing the doctor tomorrow. Be sure to write down your questions so you get answers to your concerns.
It could just be your husband is still recovering from the procedure and catching up on his sleep.
What his surgeon mentioned are symptoms of Hepatic Encephalopathy (HE), which can be a side effect after a TIPS procedure. But it is a different thing than normal sleep. HE typically initially causes mental confusion, poor memory, disorientation and can get worse and cause stupor and coma in the worse cases.
Has your husband been diagnosed and treated for HE before?
Is he taking lactulose to manage his HE?
If he has been diagnosed with HE it would be good for you to learn to notice the signs of HE as the patient themselves often can't tell when it is happening to themselves. You you notice signs of HE then you can make sure that he is properly taking he lactulose to get it under control.
This is something you should mention to his doctor. Is he experiencing HE and if so how can we learn to best manage it.
Of course there is a very small chance of infection after the procedure. He doesn't have a fever I trust?
Also a narrowing or blockage or the the stent could case some symptoms, but again this is very rare.
Good luck with your doctor visit tomorrow. You should get some answers then.
Hector