Living with Fatty Liver and NASH
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When you were first diagnosed with fatty liver, what was your doctor's initial advice?

My sister died of cirrhosis. For years she joked that she had a fatty liver. When we asked her what that meant she said the doctor just said she was fat and so was her liver. It was less funny when she became ill. What advice did you get?

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I was told that it was nothing serious and just to monitor it.

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So many people have been told that to their detriment. Nothing serious until it is. The thing that frustrates me the most is that a lot of diseases are made worse by liver problems but the liver has no symptoms. You die of heart disease brought on by your liver but the death is called a heart problem with no concern about the comorbidity that helped kill you so the statistics are not valid.

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My blood work always showed my liver was fine when it wasn't. Doctors should not say it is not serious. At some point i had fatty liver and never knew it was going into cirrhosis. When you are told you have fatty liver that is the time to take it seriously and start changing your lifestyle then you have time to keep it from going into cirrhosis. When I found out I had cirrhosis I knew I had to make changes. I lost weight watched my diabetes and cholesterol better because I didn't know how serious it was until I read everything I could find out about it. So far my progression of the disease has slowed down a lot. It will never go away but taking steps will help to live a longer life. My goal is to do what I can so I don't have to have a liver transplant. I have read on this website about people who have gone through a lot of misery and I will do what I can to make my life easier. Take it very seriously and don't let any doctor tell you it is not serious or don't worry about a fatty liver. If nothing is done it can destroy every organ in your body.

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That is so true Mel, we hear so often that someone was told they had a fatty liver but no big deal, until it was.

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I had no reason to think that something was wrong until I went to hospital with food poisoning and just as a precaution they wanted to do a cat scan of my liver which I almost said no because i thought there is no reason because my liver was fine which I thought it was I am so glad I went ahead and had I it done. I have varices veins in my stomach and esophagus. I live in the US and have a very good liver specialist who does testing on regular basis and keeps a good eye on anything going on. I hope when people read this they take it seriously. If a doctor says no big deal they should find a new doctor I it is a very big deal and I hope this helps people realize it. I like this website and it is very helpful. I have my yearly endoscopy next week and hope nothing has changed but at least I will know. I have had cirrhosis for about 8 years now. God bless and keep me in your prayers.

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I pursued information from the first physical results which were elevated enzymes. We redid after 6 weeks of me trying poorly to diet. Then moved to next step.

I was told no fried food, no alcohol...not even in cough syrup, food products, desserts, supplements, no tylenol and NO added iron in anything, no food with nitrates like hot dogs, bacon,etc I was told to eat low fat, lean meats-beef, chicken, fish, and to avoid fatty meats like pork, lamb and reduce serving size to 4-6 oz of meat.

Took me awhile to start figuring out all the places iron is added...like anything that says enriched. Well that cut out a lot of food! But once I started following that I felt better. Cut out sugar and ate more clean resulting in 18lb weight loss. After 2 years my test results showed liver function in normal range. But as we know, this is a rest of your life deal so these changes are now my lifestyle. Even though I can't eat a lot of things at parties or family gatherings I make sure to eat some at home before hand so I am not hungray and don't feel deprived.

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Hi Bbohnie

You got a lot more information than most. Kudos to your docs. Your point that it is the rest of your life is something so many fail to really get that.

Wayne

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I was told there is no medication for fatty liver, was told to lose weight. Nothing else. But on Internet said stop eating sugar, alcohol & sodas. Change your diet to more fruits & veggies.

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Hi Similau

That is sadly how it is for so many. Most people have to find their own way to information that is of value. Just being told to lose weight usually fails

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Not so easy for those of us with allergies and intplerances to fruits and some veggies :( i have to eat SOMETHING and sorry but the food thats bad for my liver is better than something that instantly makes me sick

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No advice

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Allergies really complicate things. Very difficult balancing act. One question, how do you react to olive oil? Vitamins are one thing but energy is a different issue.

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I had no insurance for at least 15 years so consequently had no doctor visits. Due to this I didn’t know I had fatty liver until it had already progressed to NASH/cirrhosis. I think it scared my PC physician or he just didn’t know what to do and I feel like he really dropped the ball.

After I ended up in hospital on dialysis due to days of uncontrollable nausea and vomiting he seemed to take notice and even called.

As far as the best and most practical advice goes - I pretty much was on my own for some time. Groups with caring individuals like this one and the Inspire liver forums have honestly been more help than I ever thought possible.

I eventually had all the tests, underwent the procedures to confirm my NASH/cirrhosis as the rest of my medical team went above and beyond to insure that referrals were approved - But it was groups such as this that helped with my mental health and helped me interpret tests and incorporate the inevitable changes.

My gratitude for individuals like nash2 who have given and continue to give to help others.

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Thanks BU2B I appreciate your kind words. I'm working on information that we can supply to people before they are ill to hopefully change some habits before they discover liver land like we did. We are making a few patient videos with people willing to discuss their experience. Would you be interested in considering that?

Wayne

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I didn’t get no advise my doctor didn’t act like it was a big deal. I still don’t know much about it other then I asked for a ultrasound

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One of our biggest problems as patients is that many docs don't provide us with good information and you can find any kind of advice you want on the internet. We created the foundation to try to have a place for people to learn about this miserable disease. Here is a link if you are interested in diving in

fattyliverfoundation.org/

Wayne

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