Clinical trials are important. We support them because they are the only way to get treatments that work. I recently took 5 members of my family to Dr. Rohit Loomba's, a world renown liver specialist, lab at the University of California San Diego where we participated in a study seeking a genetic basis for familial liver disease. The goal is the find out what role DNA plays in the development of liver disease. If you are interested in learning more, click on the link below. If your family seems to have liver disease you might check it out.
One of the side benefits of participating in trials is that you get great testing and care. In fact, people who are part of a trial do better than the average patient even if they get the placebo because they are monitored closely, but that is a discussion for another time. For now a key fact to understand is how dangerous liver fibrosis/cirrhosis is. We measure that as the hazard ratio or how likely you are to die compared to a "healthy" person. In this chart you can see that with stage 4 you would be 10 times as likely to die as someone who is healthy.
As part of this research study I had the opportunity to get new tests of my liver health. My personal study experience began January of 2015 when I was diagnosed with cirrhosis following NASH. At that time I had a fibroscan test which gave me a fibrosis score of 21.5. That isn't meaningful for most but typically any reading over 12 is considered cirrhosis. It was a bit like one of those movie dramas where the doc says sorry you have a terminal illness and there is nothing we can do. A 3 Kleenex moment for sure.
Cirrhosis has no medical treatment and progresses to end stage liver failure and/or liver cancer which results in a long unhappy journey to meet the MAN if you can't get a transplant.
There is, however, one non-medical treatment which is to stop eating things that kill your liver. Since I wasn't inclined to meet the MAN just then, I decided to try that. It was interesting to learn that there are hundreds of different "experts" telling you what to do to fix your liver. Fortunately there is research that points to a reasonable way to go so I became part of a longitudinal, that means spanning years, study to see what effect a research defined healthy lifestyle and dietary change could do for my liver. If the details interest you here is a link to a discussion of diet.
OK, long way around, but at the UCSD study I got updates on my liver status. Remember this is 3 years since my diagnosis with cirrhosis. Today my fibroscan score is 9.6. What does that mean you might ask? Remember that first test of 21.5 was well into the cirrhosis category. A 9.6 is a stage 3 disease which means that my liver has improved significantly. This chart shows what has happened to the staging of my disease over time. If you remember the hazard ratios above, it suggests that I am about 1/3 as likely to die this year as when I started this.
What does that mean to you? For starters, it is absolutely not true that there is no treatment for fibrosis. There isn't a pill you can take for it - yet. But if you eat right, exercise, and lose weight, your body will try to heal. One of the key dietary messages is to make oleic acid, the omega 9 oil found in extra virgin olive oil, the main source of fat in your diet. Here is a discussion of olive oil that you may find of some value.
It is a lot of information, but if you really are going to change your lifestyle, you can only do it successfully if you have clear goals and understand why what you are doing is important. We hope this information is of value to you or is something you might share with others who might find it useful.
On a broader front, the foundation is working toward our goal of creating screening centers to provide early detection of liver fibrosis, before you have any symptoms, and to help you not have to face end stage liver failure. Here is a link to some information about that program.
We hope you are well.