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Brother with hepatic encephalopathy. (Australia)

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Posted 7/9/2012 12:53 PM (GMT 0)
Hi,
My brother is 42 years old and currently in ICU with hepatic encephalopathy. He has hepatitic C and is a type 2 diabetic. He underwent surgery to band a gastrointestinal bleed two weeks ago and not long after became agitated and aggressive. He was put into an induced coma and intubated. They repeatedly reduced the sedation but he continued to wake up agitated. He is now only mildly sedated, but still intubated, and I am finding it difficult to obtain any information from the medical staff. Apparently he is unresponsive when the sedation is removed, not responding to requests, and staring blankly. I have no idea what to expect, and what the future holds for him. I was wondering if anyone could help me out. Sorry if I sound naive on this subject, but I've tried to read up on this to get information, and nothing seems to make much sense.
Posted 7/9/2012 2:38 PM (GMT 0)
Hi Sondero,
HE is high ammonia levels in the blood. It is corrected with bowel movements . . thru waste. Most Dr.'s prescribe Lactulose and Rifaxamin for this condition. Depending on how high the level is, the side affects are terrible. It can get so high that a person can slip into a coma. When my husband suffered from HE, I could tell when his level was getting high. It would start with refusing to take his meds, and then argueing that he already took them, and he slipped into the coma like state several times when his level was 180 to over 200. The normal level is 35. 70 to 90, he would start to get agitated, and got worse as the level got higher.

I hope this helps you understand what is going on. There is alot of information about it on medical web sites webmd has good info on it, and I'm sure the moderators and other members will be along shortly with more info and to share some of their experiences.

Good Luck and I am sorry you and your family are going thru this!!

Debbie
Posted 7/9/2012 2:55 PM (GMT 0)
Hi, Sondero, and welcome to the forum. I'm sorry that your brother is so ill. HealthyNow/Emma described HE quite well. Are they giving your brother Lactulose or Kristalose? That is the usual treatment for HE, and sometimes Xifamimin is also given.

There is a lot of info about liver disease in the folder at the top of the page, entitled Hepatitis Resources. Has your brother ever received treatment for his hep C?

If you have specific questions, please feel free to ask. Someone will answer. It sounds as though your brother is in end-stage liver disease (ESLD) and in a coma. Hopefully, he will recover from this, but be aware that he may not. Also check out the Caregivers thread. You will receive a lot of info and support there.

Big hugs,
Connie
Posted 7/9/2012 4:24 PM (GMT 0)
Hi Sondero...all the way from Australia.

We have other members from Australia, India, UK, South Africa, Canada, and lots from the US.

Each country handles liver disease a bit differently, so I think you call your hepatologists Consultants...but that is where he needs to be, with a consultant who specializes in liver diseases.

One of our Australian Members is on a transplant list, so we know they are offered through your program...but I am not sure how readily available donors are. Have you discussed that?

Your brother has all the typical symptoms of Liver Disease...many here have suffered these same symptoms...or their partner/spouse/family has...

Do not give up hope. There are treatments for Hep C and some who keep to a good diet (low sodium, plenty of protiens (but not beef), lots of fluids) actually live a long time with their liver disease in check. No alcohol at all.

Let us hear how he is doing.

WE've been through all this at our house. Hubby was in End State Liver Disease for a year before he got worked up for transplant (and 6 months after giving up alcohol). He had a transplant in Florida in 2011 and is doing quite well now. Not perfect...but no swollen belly, no bleeding episodes, no HE, no edema in his legs, no vomiting, no itching, no brown urine, no yellow eyes...an d he is much less tired. But he still has Hep C so he IS TIRED often.

Best,
Carol
Posted 7/9/2012 9:06 PM (GMT 0)
Thank you for your responses.
As he lives alone,and is stubbornly private, it is hard for me to know what medication he is on. I am fairly sure he is on lactulose (is it a big brown bottle?), and also a cocktail of other medications. I should have mentioned that he has been diagnosed with Liver Disease, and that he is not as yet a candidate for a Transplant.
Last October we went through a similar episode, and he spent 12 days in an induced coma. He woke up slurred, and took several days to regain his speech, and movements. At no point were the words Hepatic Encephalopathy mentioned, in fact even this time I overheard one of the nurses speaking, and asked her what the term meant. Once I started researching it, it made so much more sense. I had complete faith that the medical staff were telling us everything but now realise it is up to me to dig for information. Being his sister makes it hard, as they are reluctant to tell me much (even though I am his next of kin).
I have been reading a lot of threads on this forum, and have learnt more in one night than in weeks of searching.
Today is day 15, so I will head back to the hospital armed with my new found information and do some serious questioning....so thank you.
Posted 7/9/2012 10:18 PM (GMT 0)
Sondero, there are many types of liver disease, so that's a very vague diagnosis. In order to obtain info, you might need to get Power of Attorney or at least Medical Advocacy. No, the docs and nurses don't automatically tell the family (or even the patient) everything. I always want to know as much as I can about what is going on, and ask lots of questions. Even still, I sometimes get "surprised" by a procedure or side effect. I do know that they respect patients and family who know the correct terminology. It tells them that those concerned have taken the time to learn about the disease, treatments, meds, etc.

Hugs,
Connie
Posted 7/9/2012 10:56 PM (GMT 0)
Sondero,
This is a wonderful site for information, venting frustration, sharing your thoughts and concerns, and all that is involved with Hep C and ESLD. I was in a very low place, with my husband trying to get on the transplant list, when I found this site, and the wonderful people here saved me from myself. Alot of the information I learned here, proved to the Dr.'s that I wanted my husband to live, and helped me through the whole ordeal from diagnosis to transplant recovery. Learning the terms, meds, symptoms . . all of it made for better communication with the Dr.'s here at home and at the transplant center. many times I was asked if I was a nurse!! I learned most of it here.

Good Luck with your brother, I hope he gets listed soon and has a long happy life.

Debbie
Posted 7/10/2012 2:20 AM (GMT 0)
"I have been reading a lot of threads on this forum, and have learnt more in one night than in weeks of searching."

A lot of members say that and it is gratifying to know.

"Many times I was asked if I was a nurse!! I learned most of it here."

I've had the same asked of me, Debbie. While my 15 yrs. of being a medical transcriptionist helped a lot in knowing some of the terminology, I had never done much regarding the liver. Prior to coming to this site, I had never heard of the MELD score or HE. I have learned a tremendous amount here, which certainly helped during my liver cancer experiences and ultimately a transplant.

It is a privilege to be able to pass on what I have learned to those here who are just learning all the ins and outs of liver disease.

Hugs,
Connie
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