My name is Rosemary and I am the wife of the FLF founder, Wayne Eskridge, who is an improving NASH/Cirrhosis patient. From 2010 to 2015, we were on a roller coaster ride, the type where you slowly get pulled up higher and higher, only to drop back down at stomach-turning speeds. Unfortunately, I hate roller coasters.
When we finally figured out what was really going on, I found myself looking back and lamenting “If only I had known.” Wayne and I have put together a list of some of the things we wish we had known at the start of our journey, in the hopes that it may be helpful and valuable to you.
You must be your own advocate and an active participant!
The days of “the doctor knows best” are long past; no doctor can know it all and specialists only address issues specific to their specialty.
Educate yourself and ask questions.
If the doctor in front of you cannot answer your questions, get in front of one that can. If the diagnosis does not feel right, it probably is not; get a second or third or fourth opinion until things add up and make sense.
If you are too sick to be your own advocate, find someone that can do it for you.
When the doctor tells you what you want to hear, but it does not really add up, do not simply accept it.
You can have advanced liver damage (i.e. stage 4 damage with cirrhosis) and have absolutely no symptoms.
Your liver test values can be completely normal.
You can feel fine and not have jaundice or any other symptoms.
A liver biopsy can confirm that you have liver damage. Unfortunately, in the early stages of the disease, it cannot confirm with 100% confidence that you do not have damage. Since the damage can be patchy, it can depend on where the biopsy is taken and whether the sample size is adequate. Pathological interpretation can vary. It can also depend on how experienced the pathologist is in reading liver biopsy slides.
The average primary care physicians and Gastroenterologists know little to nothing about fatty liver and liver disease. They believe that fat in the liver is benign and will not hurt you; they are likely to tell you “it is nothing to worry about”. They tell their patients that there is no treatment for NAFLD and NASH since there is not a pill they can prescribe. They may mention in passing, but do not emphasize the importance of losing weight, getting exercise and changing what you eat. They do not believe their patients are capable of changing their behavior and losing weight.
They do not tell, that for some patients, fatty liver can progress to NAFLD, NASH, cirrhosis, liver cancer, and even death. What I thought was a healthy diet, really was not.
Too much sugar is as damaging to the liver as too much alcohol. Too much sugar is the primary thing that turns to fat in the liver. Eating excess white flour, white rice and potatoes is almost the same as eating sugar. Saturated fats (e.g. milk fat, red meat fat, etc.) cause inflammation which is bad for the liver.
While the liver can regenerate, there is a point of no return where there is so much damage that it cannot repair itself; at this point, the only option is a liver transplant. There are not enough livers to meet the demand for all of those that need one. As the liver fails, you develop terrible symptoms (e.g. constant itching, varices, HE, ascites, fatigue, jaundice, pain, bleeding, etc.) Liver damage can lead to other organ damage (e.g. pancreas, heart, etc.) and diabetes, heart, digestion and brain problems among other things. While it is way better than death, life after a liver transplant is not a cake walk with all of the pills you have to take, higher risk of infection, etc.