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.

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  • 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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