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doctors don't listen to patients

Posted anonymously with permission of the patient

 In October of last year (2017), I went to the ER with what I knew were symptoms for Hepatic Encephalopathy. When the ER doctor asked me why I was there, I told him. He patted my hand and told me, “ probably just have a uti. As you get older, they can cause confusion.” I looked him straight in the face and told him, I have cirrhosis. Test for Hepatic Encephalopathy. Thirty minutes later he came back a little paler and told me yes, I tested positive for elevated ammonia and was being admitted to the hospital. Four days and two episodes later, I was finally discharged. 

Doctors don’t listen. They know what they know and won’t change their minds. Incidentally, I did also have a uti. If I hadn’t spoken up I would have been sent home with antibiotics and orders to follow up with my PCP. 

The other thing I have to constantly watch are drugs that are prescribed. It is maddening to realize that my husband and I are constantly on watch even with the doctors we trust. Always the question is “How does that interact with the liver?


Drug interaction and liver toxicity are a serious problem for liver disease patients.  They may have been diagnosed by a gastro or hep specialist but they end up in the care of their primary care doc who rarely has training in liver disease and potential liver damage tends not to be top of mind.  Communication between specialties is very limited until a patient is so sick that they are in the care of a transplant team which increases the risk for their disease to progress.

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