I'm having a moment (or a day) of self pity and I just need to unload a bit. I'm pretty skilled at pretending to be OK. But not today
Between the ascites, edema and atrophy, every time I look in the mirror I am so grossed out by what I see. I'll be alone for the rest of my life. I can't even be touched without wincing in pain. I have had this drug resistant UTI for 2 or more years, I keep Lactulose in the house for fear of having an accident. Almost all the things on my list of reasons to live have been eliminated by my failing health or by the medications to treat it.
I'm tired beyond anything someone who has never experienced the type of fatigue having MS and a barely functioning liver causes. I feel like depression is going to get to me any minute and because I've been there before I am terrified and feel helpless just laying here waiting for it.
I'm finding it almost impossible to muster even a single happy thought. I'm not the type to feel sorry for myself but the recent Alpha-1 antitrypsin deficiency diagnosis and the the thought of having passed this fate along to my kids is so hard to accept, even worse than being told I'm terminal....the thought of my kids going thru what I'm dealing with health wise is just too much for me today.
Knowing I'll never have another relationship is also getting to me. I spent a lifetime trying to fall in love and live happily ever after and now I feel cheated and sad and I just want to sleep for a few months. I hope I can snap out of this 'poor me' shit. It isn't like me and it it makes me hate myself even more. I'll shut up now and go back to sleep. Hopefully I'll wake up in a better state of mind — feeling fantastic.
The four horsemen of the apocalypse. The vision of death and destruction for humanity from the new testament is a chorus of the woes that can befall society. It evokes hazard from all directions bringing misery and the pale horse called death.
When you come to grips with the health aspects of liver disease it is a surprise to learn that our understanding of our bodies as an integrated system is so poorly appreciated. The mix of chemical processes that are done routinely by the liver cannot be duplicated by our chemists. It is estimated that over 500 functions are performed by the cells of the liver and they affect every other kind of tissue in the body. Imagine that, all of that activity in a cell about one fifth the width of a human hair.
If you believe in miracles that is one to consider. Chances are you abuse your liver constantly without even considering it. Nutritionist Victor Lindlahr coined the phrase "You are what you eat" in 1942 but we pay little attention to that as we attempt to become sugar, salt, and alcohol. Your liver fights to keep you healthy but eventually your daily attacks wear it down.
I think of it rather like an abused wife who is beaten every day but trudges on until one day she has had quite enough and decides to do a Bobbitt on you. ( For anyone not a news junkie that was a wife who cut her abusive husbands penis off ). Once your liver starts to fail it affects all other organs in your body in some way. It is the common comorbidity of a very long list of disease conditions. Keeping it healthy is probably the single most important non medical thing you can do to give yourself the best shot at a quality of life as you age.
You don't have to be a food fanatic to treat your liver kindly and thereby add years to your life. It works very hard to protect you so just a modicum of care can save you a lot of pain in the end.
This is an overview of our site. Liver disease is complex and we invite you to study it but if all you want is a quick summary the site probably isn't for you
I was shocked to learn I am a cirrhosis patient and because of that I became a patient advocate. I decided the best way to have a voice was to create a non-profit foundation. If you are here, you or someone you care about, is obese, is ill, has or is at risk for liver disease or a co-morbidity associated with it. Obesity is a major cause of the problems. You won’t care about this topic except as a health or diet issue.
This is what you will find here:
- Non-technical explanation of how your body actually works
- How the liver develops disease over time
- Why fats are a critical source of fuel for your cells
- How the liver manages triglycerides
- How the course of fatty liver disease depends on triglycerides and carbohydrates
- How the kind of dietary fat you use matters
- Information by a liver patient for liver patients
- Information about diet based upon bio-chemistry not fads
This site is not trying to sell you anything.
We are a nonprofit foundation and we do not represent anyone but the patient. If you are looking for advice on supplements or quick fixes this is not the place for you. We offer extensive information about the body in general, the liver specifically, and we recommend lifestyle strategies that have worked for me specifically and which I believe are valuable for anyone concerned about liver health to be familiar with. The strategies are also the best we know of for weight control and management. If you struggle with weight you need to understand how the body works rather than just buy expensive stuff from the guru of the month. Our goal is to help you understand the problem so that you can deal with it effectively.
This site offers you extensive opportunity to add your own comments and experiences to the pages. We invite you to add your own thoughts if you would like to. Patient and caregivers stories are especially helpful to other sufferers.
The Fatty Liver Foundation is by liver patients for current and future liver patients. The site is still under construction and many of our planned programs are still being developed. Just in case you are new to liver disease, here is a video describing liver anatomy that you might find useful as a place to begin the journey of understanding.
For now let's get started by making a connection. Consider joining the site or one of the groups we are forming.
If you would like to connect with other people who are concerned about these specific issues you can join one of these groups
Just a note, at the end the video above they will offer you other YouTube videos but they aren't part of our program though many are useful. Be aware that we can't control the videos they offer you.
We start with the fact that the fundamental problem is the bio-chemical flow between the liver and fat cells. When diet is poorly balanced, over time fat accumulates in the liver and by itself is rather benign but when other chemistries like insulin management begin to degrade you get inflammation which leads to fibrosis and if not stopped progresses to cirrhosis. Since there is no treatment your tool is diet and the question is to avoid anything that stresses the liver and load up on anything that is protective. Easy peasy right. Well let's take a look
- eliminate all alcohol
- eliminate most saturated fat and no red meat
- eliminate all non skim dairy products
- eliminate trans-fat and all hydrogenated oils
- eliminate all high fructose corn syrup
- eliminate most sodium -- the goal 1,500 mg of salt.
- eliminate all added dietary sugar
- eliminate processed grains, no white flour or white rice
- Avoid most products hustled by the supplement industry
- Make sure that any medications you take are not harming your liver
Oh my god. That is a terrible list. Not possible to live that way. OK, take a breath. The goal is to take as much pressure off the liver as possible, provide molecules from your diet that are protective and don't stimulate the stellate cells to initiate scaring, but still provide proper nutrition. So what do you do?
- For oil get 60 ml, that's 1/4 cup, a day of extra virgin olive oil
- Take one tablespoon per day of refined fish or salmon oil
- Don't buy prepared foods without reading the label, there isn't actually much that you can buy
- Eat lots of fruits and vegetables but remember the salt limit
- Learn to like kale, lima beans, brussel sprouts, etc.
- Look for fiber like whole wheat bread no white breads and use brown rice
- Eat fatty fish like salmon at least a few times a week
- Eat skinless chicken or turkey and lean pork, fresh pork not processed like ham
- Explore new foods like quinoa as a grain
- Eat plenty of vegetable protein like beans.
- Take 400 mg to 800 mg of vitamin E
- Drink 3 to 4 cups of paper filtered coffee daily
- Be aware that eating out is tough as very little of it is good for you
- Take 4 gm of BCAA in a vegetable smoothie or water at bedtime
You get the idea. you might call this a type of Mediterranean diet but the excess olive oil is specifically a medicine. The rest is mostly nutrition. The fish oil is to get a significant source of omega 3 oil to balance the omega 6 you routinely get in food. The salt limitation is good for you and lowers your blood pressure. The BCAA is a branched chain amino acid mix which is basically predigested protein and helps prevent muscle wasting if your digestion is damaged.
So why should you think this might work for you? Without getting too technical your energy systems are built around triglycerides. Any oil can be used by the body to make them but if made with unsaturated oil they are better for the body. More importantly olive oil is mostly an omega 9 fatty acid. Good olive oil is a complex mixture of around 30 oils and phyto chemicals which support liver function and soothe activated stellate cells which cools inflammation. Good olive oil causes a burning feeling at the back of your throat. Those are the phyto chemicals and more is better if you ever go to an oil tasting bar. The omega 3 reduces the amount of inflammation caused by omega 6 and is required for good health even if you don't have liver disease.
DISCLAIMER: Be aware that I am not a doctor. I cannot give medical advice. I am a cirrhosis patient and I have apparently halted the progression of my disease following this strategy. You must not assume that this advice will necessarily apply to your situation and you must work closely with your physicians as your situation is unique to you.
- 100,000,000 Americans have a fatty liver. Most don't know it.
- 20,000,000 will develop liver fibrosis disease or NAFLD (nonalcoholic fatty liver disease) as a result.
- 2,000,000 million will progress to liver cirrhosis or NASH (nonalcoholic steatohepatitis) and end stage liver failure.
- Some will be lucky enough to be listed for a transplant, the only cure for late stage liver disease, but 30% of those listed will die waiting. Death by liver failure is long and difficult.
- We want to help you avoid this kind of death by helping you understand how you may be killing yourself slowly. And, what you can do about it.
- If you are already ill, we will do our best to help you with that process.
To improve the diagnosis, treatment & support of Americans with fatty liver, NAFLD or NASH through awareness, education, screening & advocacy.
About NAFLD & NASH
> This short video, from John's Hopkins Medicine, gives a good overview of nonalcoholic fatty liver disease. Dr. Saleh Alqahtani, director of clinical liver research and assistant professor of medicine, answers questions about the causes, symptoms and treatments.
> In this video, brought to you by THE NASH EDUCATION PROGRAM, internationally renowned opinion leaders address NAFLD (nonalcoholic fatty liver disease) and NASH (nonalcoholic steatohepatits) and their challenges.
> This video is fairly technical, but well worth the time to watch. Dr. Stephen Harrison, Hepatologist and international opinion leader in fatty liver disease and NASH, discusses the evolving landscape of fatty liver disease in the United States as well as diagnostic approaches to identify patients at risk for this disease.