Many patients are going to The Liver Meeting each year. I remember right after my liver totally failed. Someone in a forum mentioned that the American Association for the Study of Liver Disease (AASLD) 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 first hand how I could continue to live with end stage liver failure. Read here for more patients stories about how they survived many different types of liver disease.
We keep rolling along after the diagnosis
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. It began with me typing words into google cures for Hepatitis C after beginning treatment. There was an article written about him. So I wrote one about his contribution to liver disease and his use of the word CURE. I liked a tweet that he had going. 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.
Patients Getting Involved in The Liver Meeting
Fast forward through my own diagnosis with liver cancer and then a transplant, I am now a huge fan of the AASLD. As a patient, I spend a lot of time reading about the latest developing drugs and treatments. I enjoy knowing what options are available. This is not only for myself, but also for those friends that I interact with here on the blog and anywhere that liver disease is being talked about.
I’m meeting with Dr. Doug LaBreque and Dr. Jay Shubrook today in a zoom to talk about how we can create more meaningful dialogue with our doctors. I’m super pumped up about this opportunity to break open the code of patient and doctor speak. Okay. Sometimes I’m a little brain foggy and get a little nervous about chatting with the MDs. But they’re SO nice. Turns out they LIKE us and they want to know how to help us feel better.
As a teacher, I always think of doctors from the academic aspect. Translate: The men and women who make up the AASLD are the ones who did their homework in high school. They cared so deeply about practicing liver medicine that they took additional time to get accepted into a university. They spent most of their young adult life studying medicine.
At some point, they developed an interest in the gastro system, the field of hepatology – study of the liver – or even transplant medicine. Some became primary care, others clinicians, surgeons, and hepatologists.
Medical providers are listening to their patient’s voice and experience.
The patients who go to The Liver Meeting AASLD will meet many friends, patient advocates, and medical providers. Some of them are in the patient lounge, webinars, chats, and workshops. But we will also be gathering together. I love to join the chats where it’s patients like us leading the talk and we all get a chance to ask questions and learn more about how we can Live Longer Stronger with liver disease. I’ll be hosting a live chat in November from Boston and I’ll tell you more about it soon!
Our most powerful health resources are our doctors, spouses, families, friends, social networks, and communities. They help us to bring a sense of vitality to an otherwise sick and dreary existence. I hope you’ll join me and let’s find out what doctors want us to know about our health.
Patients are going to The Liver Meeting
I’ve got a scholarship for you! Email me or respond in this blog and I’ll give you a ticket to The Liver Meeting. xo Karen
