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Old 12-08-2008, 10:59 PM   #1
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reagan1861 HB User
hepatic encephalopathy stage 4(?) -- anyone with experience please

Hi,

A relative of mine has been diagnosed with this...He was found unconscious (though I have also been told he was combative at the time--not sure which is true) about four days ago. He was placed on a ventilator due to the fact that his breathing was very labored. He is on the standard treatment for this condition as far as I know (lactulose, antibiotics, etc) but has really shown no improvement. He has not regained consciousness but still is responsive to pain. He is also being given Atavan (a sedative)--they explained the reason for that as being that he needs to be sedated to be on the vent. They tried reducing the vent but his O2 saturation went down too low (I think that is what they said--having trouble understanding all this). He is to see the neurologist tomorrow and they will assess brain function.
I am getting the impression from the nurses that they do not expect him to improve. I am confused as to how they expect a person to "wake up" if he is constantly on sedatives. I know they have turned the sedatives down in order to try to wake him but he has so far not regained consciousness.
Im very worried and starting to lose hope that this can turn out well. Its been 4 days with no change. Is there anyone with experience with this out there? Is there hope that he will come out of this? Is it possible that he is no longer "there" and the only reason he is still with us is the vent? I keep reading this is a reversible condition but is it when you get to Stage 4? Any experiences/info would be greatly appreciated. Background is he has Hep C and cirrhosis/drinking and opiate use (pretty heavy). I am worried sick and still want to think there is hope but like I said, starting to think there isnt...Saw him just a week ago and he seemed OK; maybe a little out of it, which I never wouldve thought was the start of this, but I guess maybe it was...Feel bad I didnt notice or do anything...

 
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Old 12-22-2008, 10:10 PM   #2
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harka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB User
Re: hepatic encephalopathy stage 4(?) -- anyone with experience please

Hi there,

First off I am very sorry to hear about your relative. Seeing a loved one in a struggle is never an easy thing.

Hepatic encephalopathy is an indication of severely impaired liver function. Of the liver's many functions, one of them is to remove toxins from the blood. When the liver's function is impaired (as in end-stage cirrhosis) it is not able to remove toxins from even the simplest things like the protein we eat. Normally when we eat protein and the amino acids are broken down, ammonia is formed which the healthy liver rapidly clears. This does NOT happen in a severely diseased liver and the person can get confused or "encephalopathic" as they say.

The thing with severe hepatic encephalopathy, though, is that there are tons of things which can tip a person over in to confusion. These include:
a large protein meal
a gastrointestinal bleed (which is equivalent to the first one)
an infection
an electrolyte imbalance etc. etc.

Unfortunately, with every insult to the system, the person will have a hard time bouncing back because the liver itself can become further impaired with the treatments we give, thus setting up a vicious circle.

When someone has a VERY decreased level of alertness (as in hepatic encephalopathy) one can choke on his own saliva and die, so the doctors as a precaution intubated him to protect his airway and hooked him up to a ventilator. A small amount of sedation is needed when someone is on the ventilator or they instinctively start to fight it and can make the situation worse; however, this is a double-edged sword in someone with hepatic encephalopathy because the very medications given to sedate the person can prolong the recovery because the sedatives aren't as readily cleared by the liver. Unfortunately though, there is not much alternative, and as a result, the critical care doctors will attempt to sedate the person with as little drug as possible and wean as early and as quickly as they can.

If the encephalopathy is reversible, they will be able to wean down the sedation and see your relatively level of alertness. Assuming he doesn't have any problem with his lungs, they can then take the breathing tube out and see if he protects his airway from then on.

The fact that your relatively oxygen saturation went too low when they tried to wean down the sedation was probably because he started waking up a bit too much, was fighting the ventilator thus resulting in non-synchronized breathing resulting in not enough oxygen getting to the lungs.

 
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Old 02-03-2009, 01:18 PM   #3
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Re: hepatic encephalopathy stage 4(?) -- anyone with experience please

Hi,

I was just reading about your relative and I swear I am in the exact same boat with a close relative as well. Everything you wrote is exactly what we are living through with him. Can I ask how your relative is doing? Did they come out of the coma? We were told the other day we wasn't going to make it through the night. It's been 72 hours since he went to Emergency. He couldn't wake up and did not respond, got to the ER and was intubated (the tubes down his throat to breath) because his breathing was so fast...Blood pressure dropping, etc... He was not being sedated yesterday and started to go after the tubes so today he is sedated again. He also has MRSA which is an infection. That is not good when the liver and everything else is not working too good. His blood wasn't clotting and he was getting plazma. I feel there is no hope. Do you think there is? I am still trying to get him on the liver transplant list but it's been a long process. I'm not givnig up just yet. Just wondered what to expect since the doctors don't seem to give us any answers! Thank you

 
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Old 02-03-2009, 01:23 PM   #4
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Re: hepatic encephalopathy stage 4(?) -- anyone with experience please

Quote:
Originally Posted by reagan1861 View Post
Hi,

A relative of mine has been diagnosed with this...He was found unconscious (though I have also been told he was combative at the time--not sure which is true) about four days ago. He was placed on a ventilator due to the fact that his breathing was very labored. He is on the standard treatment for this condition as far as I know (lactulose, antibiotics, etc) but has really shown no improvement. He has not regained consciousness but still is responsive to pain. He is also being given Atavan (a sedative)--they explained the reason for that as being that he needs to be sedated to be on the vent. They tried reducing the vent but his O2 saturation went down too low (I think that is what they said--having trouble understanding all this). He is to see the neurologist tomorrow and they will assess brain function.
I am getting the impression from the nurses that they do not expect him to improve. I am confused as to how they expect a person to "wake up" if he is constantly on sedatives. I know they have turned the sedatives down in order to try to wake him but he has so far not regained consciousness.
Im very worried and starting to lose hope that this can turn out well. Its been 4 days with no change. Is there anyone with experience with this out there? Is there hope that he will come out of this? Is it possible that he is no longer "there" and the only reason he is still with us is the vent? I keep reading this is a reversible condition but is it when you get to Stage 4? Any experiences/info would be greatly appreciated. Background is he has Hep C and cirrhosis/drinking and opiate use (pretty heavy). I am worried sick and still want to think there is hope but like I said, starting to think there isnt...Saw him just a week ago and he seemed OK; maybe a little out of it, which I never wouldve thought was the start of this, but I guess maybe it was...Feel bad I didnt notice or do anything...
Hi,

I was just reading about your relative and I swear I am in the exact same boat with a close relative as well. Everything you wrote is exactly what we are living through with him. Can I ask how your relative is doing? Did they come out of the coma? We were told the other day we wasn't going to make it through the night. It's been 72 hours since he went to Emergency. He couldn't wake up and did not respond, got to the ER and was intubated (the tubes down his throat to breath) because his breathing was so fast...Blood pressure dropping, etc... He was not being sedated yesterday and started to go after the tubes so today he is sedated again. He also has MRSA which is an infection. That is not good when the liver and everything else is not working too good. His blood wasn't clotting and he was getting plazma. I feel there is no hope. Do you think there is? I am still trying to get him on the liver transplant list but it's been a long process. I'm not givnig up just yet. Just wondered what to expect since the doctors don't seem to give us any answers! Thank you

 
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Old 02-13-2011, 03:22 PM   #5
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wwj56 HB Userwwj56 HB User
Re: hepatic encephalopathy stage 4(?) -- anyone with experience please

Survivor of stage 4 hepatic coma 4-28-94 to present.
Metabolic Hepatic Encephalopathy as a result of Hepatitis B & C. I had liver failure, renal and resp. failure that resulted into bilateral pnemonia due to lack of respiritory care (bing turned and given pulpatations that would reduce fluid build up in the lungs), Babinski signs, doll's eye syndrome. Non-responsive to Mannitol and Haldol.
EEG showed Triphasic waves w/low voltage, non-responsive to noxious stimuli. Amonia levels peaked at 159 & Biliruben 78.
I entered the hospital 4-28-94 in stage 2 -3 of hepatic coma, by May 1st. was in stage 4 till May 12 -14 when I became responsive.

I have found little to no help on my residual condition, professionally that is. After 8mo. to a year I found that Faith, Knowledge and exercise (Byicycling) was very helpful (and still is) in my recovery. Speaking of myself, I believe I'll alway's have the residual effect's (yes plural) from my experiance from this condition. Though all of these are not negative, I've gained a great spiritual experience that gave me a great more sense of open-mindedness and stengthend me to who we really are. This has been a core essence in recovery...or I may well have never found this site or even gained the Knowledge to use or even to build the computer system I'm typing this on that found this site during my search for answers like the others here.

My Neurologist at the time eventually told me "I had died, no brain activity conclusive of life". That is why I could not find any medical help, that they don't even understand why I'm alive and survived this ordeal.
I have found no medicine that is helpful toward the residual effects I have incurred. What seem's to work for me is Spiritual and intullectual stimulation combined with exercise, also sleep seems to quell anxiety type symptoms. Spirituality has been a main focus, for one thing I found It's real and exists in us, as we exist in it. AA philosophy has proven true to me (HOW - Honesty, Openmindedness and Willingness) towards all.

In 94' I was told I have Hep-C after awaking from the coma. That my enzyme levels wasn't high enough for the experimental interferon treatment (I couldn't afford at the time) so I waited...in 98' I finally had insurance and proceeded to see about the interferon, they took two blood samples, sent them to labs and came back Negative ! The doctor (which I had to grab by the arm to get his attn.) was mumbling to himself in disbelief told the phlebotomist to take 6 samples (two to three different labs) they also came back Negative. I have no sign of it in my blood work at all, even now it's not there.

I've been prescribed Imimpramine, Doxipin and Paxil early on "94" and had to discontinue their use (they did nothing for my condition, Paxil only worsened it with outer thoughts not my own) the Neurologist told me I should never have been predcribed the Paxil "as it act's like a speed for the mind, where as mine needed to be slowed down" due to unknown CNS damage.

I hope this might help anyone that has been through what I survived from...or a family member looking for answers...their is not alot of them out there. In the last 6 mo. (2010) I have seen another neurologist and all he could tell me is their is signs of brain atrophy akin to a much older person then I am. That he had no answers to help, and from my own experience "I was my best physician" oh and "good luck, i won't be seeing you again, sorry you pickled your brain" was his last words with me. I pray for him...

Since 2010 a psychiatrist put me on a Benzodiazapine, though it only mask's my symptoms and I may discontinue using them (under supervision).

My deep prayer and sympathy goes out to all who have suffered from this condition, especially their famillies....Though seek and you shall find... Via con Dios.

Last edited by wwj56; 02-13-2011 at 03:32 PM. Reason: I find myself forgetful at times.

 
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Old 02-13-2011, 03:44 PM   #6
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wwj56 HB Userwwj56 HB User
Re: hepatic encephalopathy stage 4(?) -- anyone with experience please

Survivor of stage 4 hepatic coma 4-28-94 to present.
Metabolic Hepatic Encephalopathy as a result of Hepatitis B & C. I had liver failure, renal and resp. failure that resulted into bilateral pnemonia due to lack of respiritory care (bing turned and given pulpatations that would reduce fluid build up in the lungs), Babinski signs, doll's eye syndrome.
EEG showed Triphasic waves w/low voltage, non-responsive to noxious stimuli. Amonia levels peaked at 159 & Biliruben 78.
I entered the hospital 4-28-94 in stage 2 -3 of hepatic coma, by May 1st. was in stage 4 till May 12 -14 when I became responsive.

I have found little to no help on my residual condition, professionally that is. After 8mo. to a year I found that Faith, Knowledge and exercise (Byicycling) was very helpful (and still is) in my recovery. Speaking of myself, I believe I'll alway's have the residual effect's (yes plural) from my experiance from this condition. Though all of these are not negative, I've gained a great spiritual experience that gave me a great more sense of open-mindedness and stengthend me to who we really are. This has been a core essence in recovery...or I may well have never found this site or even gained the Knowledge to use or even to build the computer system I'm typing this on that found this site during my search for answers like the others here.

My Neurologist at the time eventually told me "I had died, no brain activity conclusive of life". That is why I could not find any medical help, that they don't even understand why I'm alive and survived this ordeal.
I have found no medicine that is helpful toward the residual effects I have incurred. What seem's to work for me is Spiritual and intullectual stimulation combined with exercise, also sleep seems to quell anxiety type symptoms. Spirituality has been a main focus, for one thing I found It's real and exists in us, as we exist in it. AA philosophy has proven true to me (HOW - Honesty, Openmindedness and Willingness) towards all.

In 94' I was told I have Hep-C after awaking from the coma. That my enzyme levels wasn't high enough for the experimental interferon treatment (I couldn't afford at the time) so I waited...in 98' I finally had insurance and proceeded to see about the interferon, they took two blood samples, sent them to labs and came back Negative ! The doctor (which I had to grab by the arm to get his attn.) was mumbling to himself in disbelief told the phlebotomist to take 6 samples (two to three different labs) they also came back Negative. I have no sign of it in my blood work at all, even now it's not there.

I've been prescribed Imimpramine, Doxipin and Paxil early on "94" and had to discontinue their use (they did nothing for my condition, Paxil only worsened it with outer thoughts not my own) the Neurologist told me I should never have been predcribed the Paxil "as it act's like a speed for the mind, where as mine needed to be slowed down" due to unknown CNS damage.

I hope this might help anyone that has been through what I survived from...or a family member looking for answers...their is not alot of them out there. In the last 6 mo. (2010) I have seen another neurologist and all he could tell me is their is signs of brain atrophy akin to a much older person then I am. That he had no answers to help, and from my own experience "I was my best physician" oh and "good luck, i won't be seeing you again, sorry you pickled your brain" was his last words with me. I pray for him...

Since 2010 a psychiatrist put me on a Benzodiazapine, though it only mask's my symptoms and I may discontinue using them (under supervision).

My deep prayer and sympathy goes out to all who have suffered from this condition, especially their famillies....Though seek and you shall find... Via con Dios.

 
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