Comment from: Sadiethelady56, 45-54 Female (Patient)Published: July 20
I have hepatic enchephalopathy. It's the scariest thing I've ever dealt with and equally as frustrating. I have always been a very strong person, and now I don't trust my decisions. I second guess my decisions, am scared to death of protein, and for a retired cop who's used to having it all under control, it makes me crazy. I find myself just withdrawing from everyone rather than do something stupid. I'm also tired a lot. My sleep schedule is bizarre after years of complete regularity. It's just frustrating and scary. I used to be able to recognize when it was elevated, but now I can't.
Comment from: IndPhil, 55-64 Male (Patient)Published: July 20
I had open heart surgery almost a year ago to repair a defective mitral valve and a bypass surgery. During the surgery, the surgeon restarted my heart to observe the repaired valve, and he was not happy with the results, so he put me back on the heart-lung-bypass machine to correct the valve functionality. Following the surgery, it took four days for me to regain consciousness. When I did awake, I had no idea where I was or why I was there. Gradually, with help of my family, I regained at least part of my memory. I was told I had been non-responsive for four days following the open heart surgery. It has now been 11 months, and I am still trying to put all the pieces together. I tried to go back to work about 90 days post-surgery but have not been able to hold a job down. There are times without warning when my mind will go blank and my wife will say, "Where were you, or where did you go?” This has been freaking me out. I now understand that following my open heart surgery I developed "encephalopathy." I am still trying to get my arms around this and am so very confused. There are times I want to cry without warning. I just applied for disability as I turned 62 yesterday.
Comment from: 55-64 Female (Patient)Published: October 06
I have Hashimoto's encephalopathy. It is treated with steroids, specifically prednisone or, in my case, Medrol. ( Few encephalopathies are treatable.) It is one of the lesser-known encephalopathies. It is related to Hashimoto's thyroiditis in that the thyroid antibodies attack the neurons of the brain. I thought I was developing dementia. The main symptom at first is short-term memory loss. There can be stroke-like symptoms, tremors, confusion, walking problems, and seizures to name a few. I could have ended up in a nursing home...and maybe some people without more knowledgeable doctors have. Thankfully, I was diagnosed early and treated by a good doctor. I was able to return to work.
Comment from: sharon2065, 55-64 Female (Caregiver)Published: October 06
My sister is 65 years old and is hospitalized in an ICU unit in Houston with the diagnosis of encephalopathy. She went from normal activity to confusion to coma in a relatively short time. She is completely unresponsive. The doctors have run all the tests and so far are unable to find the reason for the encephalopathy. Her prognosis is very poor because it is thought that she has had an MI and CVA; she is positive for pneumonia. This is a very confusing disease process.
Comment from: rpg.inc, 65-74 Male (Caregiver)Published: March 29
My father has been diagnosed with hepatic encephalopathy, peripheral neuropathy, and osteoarthritis on his knees. He's only 67 and it is believed to be his alcoholism that caused this condition. The doctor has started him on hospice but I have hope he can get better. He is cognizant and speaks, although repeats his phrases quite a bit. Is there any therapy out there that can help? He eats well but it is getting more difficult to move around and he's lost bowel control. Need better advice than hospice. Can anyone help?
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I have hepatic enchephalopathy. It's the scariest thing I've ever dealt with and equally as frustrating. I have always been a very strong person, and now I don't trust my decisions. I second guess my decisions, am scared to death of protein, and for a retired cop who's used to having it all under control, it makes me crazy. I find myself just withdrawing from everyone rather than do something stupid. I'm also tired a lot. My sleep schedule is bizarre after years of complete regularity. It's just frustrating and scary. I used to be able to recognize when it was elevated, but now I can't.
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