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Old 02-13-2011, 04:22 PM   #5
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Join Date: Feb 2011
Location: Phil, PA USA
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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 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 04:32 PM. Reason: I find myself forgetful at times.

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