@adah @techi @jenniferhunger @rosemarya
Hi to all. I am so sorry to hear of the mistreatment some of you have had at the hands of doctors. I hope when that happens that you change doctors as soon as possible. I would not say I have been mistreated by uncaring doctors, but I have been misdiagnosed by a doctor who basically did not put enough effort into being a doctor. I changed as soon as I could find a good doctor who was accepting new patients.
I suffered from hepatic encephalopathy when I had cirrhosis, prior to my transplant. It is a terrible thing to suffer with. Cirrhosis, as I am sure most of you know, is not always caused by alcohol. It can be caused by hepatitis or fatty liver, and a few other things. Those are the three most common causes. Thankfully it does not cause permanent damage from everything I have been told and it did not with me. I am not sure of what the other causes of HE are. What do they think cause your HE episodes, Lisa?
My HE episodes were distinct, I did not have a constant fog as some do. Some of my episodes were mild. I was able to go to bed for a few hours and wake up fine. There were some more serious ones that put me in the hospital. One was serious enough that I was basically in a stupor.
The local hospital that I went to was not great at all so I can totally understand your problems with some hospitals. The treatment there by most of the nurses was deplorable. I have been in my transplant hospital, Massachusetts General, not only for my transplant but three other times. The nurses there were incredibly caring. I hope you can find a major medical center close to where you are. I would suspect that the care there would be very much better than the local hospitals you have referred to where your care was not the best. If you can find a "magnet hospital" they generally have the best nursing care.
If you have any questions about HE, please feel free to ask. I will answer whatever I can. I was on lactulose initially, then after going to a hepatologist she put me on xifaxan and I was able to go without lactulose for almost a year. Then I had another HE episode so I had to resume taking lactulose along with the xifaxan.
JK

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