A cautionary tale

A message from Terri, a liver disease warrior.

I have some things on my mind. Pretty big stuff because it involves you guys. It has to do with the liver disease I have. You see, had I stopped it when I first heard I had fatty liver in 1998 I wouldn’t have cirrhosis today. Yes, the doctor told me it wasn’t a big deal and not to worry about it. Turns out it was a big deal. The thing that bothers me is that doctors are still saying the same things. The EXACT same thing. How do I know that? I’m an admin for a support group for liver disease with over 9000 members.

So let me tell you some stuff. I have NASH Cirrhosis. NASH stands for Nonalcoholic Steatohepatitis.

So basically fatty liver with inflammation not caused by alcohol. My fatty liver in 1998 kept accumulating fat. That’s NAFLD, or nonalcoholic fatty liver disease. Eventually my liver started becoming inflamed. That’s when it turned into NASH. As the inflammation continued, scarring started happening. As the scarring continued, which is called fibrosis, it eventually got to a point that the scarred parts of my liver affected my liver’s ability to function. That’s when I was diagnosed with cirrhosis. Now, the scarring and fatty liver content makes it easier for cancerous tumors to grow. That’s called HCC, or hepatocellular carcinoma. Or primary liver cancer.

People have asked me what were my first signs. There were none. My blood test were always perfect. My scans I had did have some indications, but not until right before I was diagnosed. I did have upper right quadrant abdominal pain, but I blamed it on my gallbladder. I did have exhaustion but I blamed it on misdiagnosed lupus. I even turned yellow once and blamed it on my meds and wrongly stopped taking them. I self diagnosed. I googled my symptoms and stuck my head in the sand because I didn’t want to know. If I didn’t have a doctor say the words “you have”, then it wasn’t so. Elective gallbladder surgery revealed the truth. By then it was too late.

So what are causes? How does one go from a healthy liver to needing a transplant? Can I tell you it’s about choices? It’s the food we eat and lack of activity. High carb choices, food highly processed, refined sugar and flour...fast food. Losing weight too fast, gaining it back, and losing it again contributes and causes scarring. Some of our supplements we take causes scarring. Liver cleanses cause scarring. Alcohol in excess. It’s a carb. It causes problems and scarring quickly.

So what do you do?
*First, get a physical. Your doctor will order blood test, including liver function tests.
*Ask your doctor to order a diagnostic fibroscan. It is a noninvasive way to measure the amount of fat in your liver.
*if there are any indications at all, even if “just” fatty liver, take responsibility and ask questions. You are more than welcome to contact me and ask questions.
*If there is more advanced stages, it’s not the end. There are many great options and you can live a wonderful life still.
*do something. Take the first steps to insure that you are well.
*Change your lifestyle now. Major on fresh fruit and veggies and lean proteins. Losing as little as 10-15% of your current body weight over a year can reverse early fatty liver and can definitely help restore function to later stages. With Cirrhosis, those changes can slow down the progression.

Please know that I speak from my heart. You may already know all of this. You may suspect some it. I’m praying for you. Please seek to know. Don’t put your head in the sand.

Showing 5 reactions

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  • Debra Rouis
    commented 2020-06-17 03:26:35 -0600
    @Alice Summers. You sound fearful and I don’t want to cause you more anxiety. NASH is fat accumulation in the liver caused by factors other than alcohol. In other words, there are people who have fat accumulation in their liver that leads to liver dysfunction or failure and some of these people have never taken a drink in their lives. There is a close association with fatty liver and metabolic syndrome otherwise known as insulin resistance. However, if you are an alcohol abuser, your fatty liver is very likely caused by your level of alcohol intake; there is really NOT another reason. I am just wondering how honest you were with your doctor regarding the amount of alcohol intake you are really taking in a day. It is very common to be in denial about alcohol abuse and there is a great deal of shame associated with it. Since you are not yet 30 years old and already experiencing fatty liver and other digestive issues, your level of drinking has to be very high. The pain you are experiencing in your right side may be pancreatitis. Your only hope at your age, if you really want to improve your health and avoid liver failure due to cirrhosis is to completely stop drinking alcohol. This might be difficult for you without some help from outside sources. I highly recommend attending an AA meeting to determine if you can relate to anything they have to say. I am glad to hear that you are looking for solutions. I would say at your age, you have no permanent damage now, but you are probably heading towards liver failure and an early demise IF you don’t change your habits right now. “Eating right” is not the problem. Yes, step away from any one or any place that triggers your alcohol consumption and make it a permanent change. Any slip into drinking again can become even worse and will rapidly lead to your liver’s demise (and yours). I hope you get the help you need and I hope I was able to answer your question.
  • Debra Rouis
    followed this page 2020-06-17 02:55:01 -0600
  • Alice Summers
    commented 2020-05-30 00:45:25 -0600
    Hello, I know your diagnosis was due to non alcohol issues. I am young, not even 30 yet and I have had bowel and digestion problems since 2012 with so many tests over the years that came back with nothing so I got slapped with IBS. I didn’t care for my body for many years and am/ was a heavy alcohol abuser. I was just diagnosed with fatty liver to which my dr said make some lifestyle changes and we’ll check you again next year. I have pain in my right side which they want to test for gallbladder issues. I have been trying to eat healthy: veggies, non dairy products, caffeine, tea, and all “the good stuff”. Now that I’m eating better I’m seriously dealing with indigestion, bloat and gas when eating pizza or a burger never causes this. I’m trying to step away from the night life and drinking and fix myself but I feel like I’m not just in the fatty liver category and there might be more so I’m always asking for advice from ppl who have suffered from these. Can I reverse this since he said there’s no permanent damage and what do you believe are the chances of misdiagnosis and it being worse than just mild fatty liver? Sorry to ask so much it’s just hard to get all the info you need sometimes.
  • Seema Jha
    commented 2020-02-20 10:31:26 -0700
    Thanks.it was great inspiring
  • Louise Millard
    commented 2020-02-12 12:30:48 -0700
    Thank you for this. I have today been diagnosed with NAFLD after an ultrasound but as I have fatigue and have had a dull ache in my liver for over six months I’m concerned that it may be progressing. It all started after six months of doing Keto to try and lose weight. I have copied and pasted this cautionary tale to my phone in order to motivate me. Thank you.

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