Hello fellow liver failure-liver patients- transplant recipients-and all of you that care about us. The site has been up for a year now and it is time for my first blog. I am looking forward to using this forum to share ideas, and I am always seeking advice on how to improve this site.
I first found out I had autoimmune hepatitis when I was 28 years old. I lived with it until I went into liver failure when I was 45. From age 45 until age 51, I got married, completed my PhD, experienced a hepatic coma from severe encephalopathy had two transplants, a mistake induced stroke, and spinal cancer. Since then I have been incredibly healthy and treasure each day I am alive.
I live a normal life. My health, while although not 100% is at least 80%. I have chosen to focus my research on evidence to guide those facing transplant, and recovering from transplant surgery. My reasons are many but essentially I found that despite my best efforts to locate information about what I would find with worsening liver failure- I found little to nothing. And if I, as a health professional and a researcher could not find anything, I could only imagine what frustrations people also searching for answers faced.
Since then there is more information on the internet, and there is more research. The problem is the gap between the scientific literature and the easily available literature on the internet, and the gap between both and the experiences of real everyday people. I wanted to translate the scientific literature, while contributing to it- and I wanted to reflect the real life experiences of ordinary people in ways anyone can relate to.
My goal with this site is to present information- information about real life experiences of people I have met and frame that around the science. So far this site is mostly about me and I assure you that will change over time as I can include more and more people in and their experiences, the same, different, better and worse. I want to lay it all out.
So enough for today- good night and until next time!