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I'm looking for any survivors of Hepatic encephalopathy Stage 4 Hepatic Coma with multiple organ failure: respiratory, Renal, Cerebral Edema (nonresonsive to Mannitol or Haldol, babinski signs, doll's eye symdrone.
16 panel EEG: low voltage with Tri-Phasic waves. I was considered "Brain Dead" and my family was told to make funeral arrangements. I guess I'm really happy they didn't go that route...LOL...Here I am alive and doing fairly well. Though I have residual effects from the CNS damage, and a sensitivity to medication...from real severe to moderate.

I've been looking for answers since 5/94". I was hospitalized on 4/28/94 and discharged on 5/19/94 so jaundiced I was bronze colored. I had Bilirubin levels peeked at 78, and Ammonia peeked at 159.

I have found no doctors that know of anything to help, hell I'm the first person they met that has survived this ordeal. Or of any other survivors like myself.
The symptoms are a third of the time I feel quite normal, then at other times I feel like I'm loosing my mind and having a nervous breakdown. I'm only disfunctional in certain way's or situations. It actually hurts to try and think, I just have to sleep through it and hope it's not there when I wake up.
I've been to psychiatrists, and all they tell me is it's anxiety and give me xanax...which just put's me to sleep (which I was already doing) or just masks my symptoms.

Any help welcome !
Sincerly,
JW
I expected this...no replies. I've felt so alone since the coma, I havn't found anyone to relate with.
Though I found one thing out, I've been seeing a sort of counselor actually he's a Dr. in neurology but from another country so he cannot practice in the US. After are first few sessions he told me he didn't want to see me anymore, as I didn't agree with his generalizations of all coma's are the same (metabolic, physical head injuries and so on).

He said he had 78 patients and not one of them was like me...so I thanked him for the compliment, that changed his mind. He told me to schedule another appointment and I've been seeing him since.

I've found though that when I'm having (let's say) a really bad episode or day if you will, having a stimulating thought provoking conversation and it dosn't matter so much the topic as long as it's open-minded and positive...it really helps...I'll walk away feeling so-much better and not feeling so Benzo-dependant...I really don't like taking them, some times I think they combine to make what I'm feeling worse.
I do alot of computer work, helping others mostly and it get's me out of myself. The same with audio I'm so into music and vintage equipment...WOW what an interesting self-started therapy.
Thank's for letting me write, I was having a real self-consience moment and not doing to well mentally & physically, sometimes it's hard to be-or get motivated. So much to live for can get quite overwhelming at times.

Thank's so much, sincerly
wwj56
[QUOTE=wwj56;4713806]I'm looking for any survivors of Hepatic encephalopathy Stage 4 Hepatic Coma with multiple organ failure: respiratory, Renal, Cerebral Edema (nonresonsive to Mannitol or Haldol, babinski signs, doll's eye symdrone.
16 panel EEG: low voltage with Tri-Phasic waves. I was considered "Brain Dead" and my family was told to make funeral arrangements. I guess I'm really happy they didn't go that route...LOL...Here I am alive and doing fairly well. Though I have residual effects from the CNS damage, and a sensitivity to medication...from real severe to moderate.

I've been looking for answers since 5/94". I was hospitalized on 4/28/94 and discharged on 5/19/94 so jaundiced I was bronze colored. I had Bilirubin levels peeked at 78, and Ammonia peeked at 159.

I have found no doctors that know of anything to help, hell I'm the first person they met that has survived this ordeal. Or of any other survivors like myself.
The symptoms are a third of the time I feel quite normal, then at other times I feel like I'm loosing my mind and having a nervous breakdown. I'm only disfunctional in certain way's or situations. It actually hurts to try and think, I just have to sleep through it and hope it's not there when I wake up.
I've been to psychiatrists, and all they tell me is it's anxiety and give me xanax...which just put's me to sleep (which I was already doing) or just masks my symptoms.

Any help welcome !
Sincerly,
JW[/QUOTE]
You are very lucky to survive such a multi organ shutdown, strong willed I bet? I implore you to find a hepatologist they really are the best qualified to treat us. Many people are shuffled off to a gastroenterologist and I feel like they do not specialize in Hep. so they are not educated enough to treat me. Even if it means a long trip they will usually only see you every 3 months once you are stable or they fell they have done all they can for you. They are also a way to get treatment from your local MD because ine calls and ask what test to order and what to prescribe according to the results so I won't have to travel. I can tell you there are hospitals that have full departments that specialize in liver failure and hep related diseases. A hep. doc may be able to help you and give you a lot more insight. Many doctors release you because they simply don't know what to do. I also want to tell you depression is a symptom of our disease, its not anxiety, I get so mad at doctors that pull a name from a shelf and label you without even understanding this is NORMAL for hepatitus. I am unlike most people and question with scrutiny everything they do and always have a team of people treating you not just a MD. I use a MD, hepatologist, physical therapist, pain management, and when I feel the need for counseling and coping comes my doctor said just let me know when you want hospice they are not just for when you are dying ya know? I hope this helps and good luck, also if you do notlike the first hepatologist you see do not return and find a better one. I actually filed a complaint against how rude the first one I saw was, remember you are paying him he should treat you like any customer getting any service not just shun you and give you nerve pills. I take xanax and have long before I was diagnosed with hep. because I need them for panic attacks. I do not sleep on them because I have gotten used to them but they are actually hard on your liver so I take them as little as possible.
P.S. I have not had organ failure but am on the largest possible dose of lasix along with a additional diuretic because my liver just won't work without them, I have attacks just like you described that involve, headache, confusion, exhaustion and sleep 24-48 hours, fever, chills to the bone until my teeth click, nausea vomitting the hepatologist says it is a build up of toxins in the bloodstream and I shut down to rest and recover. I feel much better after I sleep them off but am very debilitated during them so weak I can't even go to the bathroom and I usually don't need to since I sleep through my diuretic dosing. This has nothing to do with anxiety or going crazy its how i respond to teh toxic wate in the bloodstream. I and very confused and also have severe memory loss anymore i mean I foret something 5 minutes later. The list of hep and chirosis symptoms are

◦Nausea
◦Vomiting
◦Diarrhea
◦Loss of appetite

Fatigue

◦Pain over the liver (on the right side of the abdomen, just under the rib cage)
◦Jaundice - A condition in which the skin and the whites of the eyes turn yellow
◦Dark-colored urine (may look like cola or tea)
◦Stoolsbecome pale in color (grayish or clay colored)



•Prolonged nausea and vomiting can cause dehydration. If you have been vomiting repeatedly, you may notice the following symptoms:

◦Fatigue or weakness
◦Confusion or difficulty concentrating
◦Headache
◦Not urinating
◦Irritability



•Chronic hepatitis C can lead tocirrhosis of the liver in many people, a condition traditionally associated with alcoholism. Cirrhosis is a condition in which healthy liver tissue is replaced by fibrous tissue,followed byscarlike hardening. As this happens, the liver gradually begins to fail, or lose its ability to carry out its normal functions. Eventually, symptoms develop. Symptoms of cirrhosisinclude the following:

◦Fluid retention causing swelling of the belly (ascites), legs, or whole body
◦Persistent jaundice
◦Fatigue
◦Disturbances in sleeping
◦Itchy skin
◦Loss of appetite, weight loss, wasting
◦Vomiting with blood in the vomit
◦Mental disturbances such as confusion, lethargy, extreme sleepiness, or hallucinations (hepatic encephalopathy)
Thank's for the reply, my prayers are with you. You must also be very strong willed, for what you go through daily...mine pale's to yours.

My hep-b turned neg by aug 94" and my liver showed no signs of damage, and has tested normal function since then.
I was also diagnosed with hep-c then, though my enzymes wern't high enough for the (then it was new, interferon study at WSU). I was told to come back when I had insurance as the cost then was high. I continued testing on the hep-c (blood work)till about 96" then just stopped going, it was depressing.

In 98" I went back for hep-c tests (as I acciured insurance then), the results showed the hep-b exposure, though there wasn't any signs that I ever had hep-c, and till this day I till show like I never had it. Not any traces of it at all. Though my liver shows normal on test, I do have renal problems...the test show the kidney's are normal...though I have frequent urination sometimes and also bouts of gout from mild to severe (I can't hardly walk at times.)

Your right about the benzo's, my systems so sensitive I can feel the adverse affects on the liver and kidney's. I also have to stay away from anti-depressants like : seritonin reuptake inhibitors really mess me up, my neurologist at the time said my neurological fuctions need time to heal and that the SRI's act as a type of speed for the mind..I had auditory hallucination on them (thought not of my own, implying suicide) it went away afer stopping use (94").
Since the coma I am very sensitive to certain meds, a practitioner precsribed hydroxizine wich is normallly mild on people...it said take 1-2 capsules for sleep...which I did, I was awake till 5:30 am and after finally sleeping when I awoke I felt hungover, stumbling around like someeone took a baseball bat to my head(it lasted for 3 days the side effects). I really have to watch what I take, and like yourself I don't trust doctors and get secound opinions. We don't have a hepatologist here. And for the most part I feel ostracized by most doctors.
I pray for the best for you, your a very indurant person with a very strong spirit...may this find you well.

wwj56
I had a similar experience in 1975. I had Hep B. Never figured out how I got it. I was in a coma but was not declared brain dead. My family was all brought in and waited for me to die. After several more days I just started waking up. I do not have any problems related to the Hep B. I do, however, have Lupus. I have suffered from depression for years and fatigue but like I said I don't think it is related to the Hep B. I know I am very fortunate to be alive and to have no damage.
Hi janma2! Thanks for posting the info. on Hep. It is very accurate. wwj, my heart goes out to you. On Christmas eve, I was taken to the hospital with nausea and vomiting, i couldn't speak and I was told I was acting irrationally. All I remember was a reader who sat with me in my hospital room. I was given no treatment other than dehydration. I went to my Dr. the next day, she admitted me to the hospital immediately! The ammonia level was so high, had I waited, I would have gone into a coma and died. The nurses at UCSD gave me Lactulose to help my liver remove the ammonia from my bloodstream. I am also taking Refaxamin to help clear my major brain fog. The ironic thing was I got a SSA denial for the 2nd time...those idiots!!! Anyway, if you are not on the above medications, ask your Dr. about them. And also, be good to yourselves, and enjoy each day, one at a time.





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