For Patients Caregiver Tips and Advice For Medical Professionals

Janet R.

Hepatic Encephalopathy/Hep C/End Stage Liver Disease

In the fall of 2011 I fell into End Stage Liver Disease (ESLD) from having Hepatitis C for over 30 years. I was unaware I even had Hep C for the first 19 years and got it from a blood transfusion after a near fatal auto accident.

I went into End Stage Liver Disease in the Fall of 2011. The symptoms I experienced were bleeding varices, hepatic encephalopathy, ascites, swelling of my legs and feet, extreme fatigue, and so much more.

I received a life-saving liver transplant in May 2012 and eventually was cured of Hep C. The sneakiness of liver disease is frightening to the patient who wakes up one day and finds out they have something that will eventually kill them and for many of the them, the only resolution is a transplant. And then the thought of a transplant in and of itself the terrifying when you first hear these words. I had the “thrill” of hearing from a doctor to do my bucket list and do it fast, which is something on NEVER wants to hear!

My involvement with the American Liver Foundation is fueled by a desire to help patients living with liver disease and to assist those who are needing a transplant. Spreading the knowledge an awareness of liver disease and the various treatments and cures has become a lifetime passion. I’ve helped several people facing transplant find live donors. I’ve helped over a thousand people fight to get insurance approval to be able to get cured of their Hepatitis C and look forward to joining the National Patient Advisory Committee to represent those suffering from Hepatic Encephalopathy (one of the side effects I suffered while in ESLD). I volunteer, speak to various audiences, raise money and have travelled to Washington D. C. to speak to legislators about the importance of the ALF mission.

Janet is an ALF patient advocate and member of our HE National Patient Advisory Committee and Board Chair for our Rocky Mountain Division. Click here to learn about Hepatic Encephalopathy, and learn more about our advocacy mission here.


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