Many patients get involved in The Liver Meeting each year. In 2011, right after my liver totally failed. Someone in a forum mentioned that the American Association for the Study of Liver Disease (AASLD) meeting was being held in Boston. I was SO hungry for information and wondered if it were worth it to attend. Well, I didn’t that year because of another varices bleedout. But I always wanted to go, to hear firsthand how I could continue to live with end-stage liver failure.
I kept plugging along, reading on the AASLD website and following doctors in social media. It was one of the things that kept me alive. I needed to know that someone cared enough to study the medicines and the treatments that would give me some extra years. Ok. I was filled with sorrow and grief. It was a sudden diagnosis. I had slept through the last 2 years. My hepatic encephalopathy was bad enough that I was hallucinating. I wanted my mind and body back so bad.
My first personal involvement with the AASLD was through a doctor named Don Jenkins. I was googling cures for hepatitis C after beginning treatment. I read an article about him and then wrote one about his contribution to liver disease and his use of the word CURE. I tweeted him. It became a friendship where he sent me articles about my esld, and encouraged me to keep a healthy lifestyle and never give up. His warmth and friendliness gave me courage. He was an expert, yet he cared about every patients health enough to encourage me to wrote and reach out to other patients.
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This entry was originally posted on I help C on September 19, 2021, and is reprinted with permission.