Sharing My Experience: Lean, Mean, F... - Living with Fatty...

Living with Fatty Liver and NASH

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Sharing My Experience: Lean, Mean, Fighting Machine to Obese Individual With Full Blown Live Cirrhosis

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I will be 64 years old this May. I was a born a male and weighed 9 lbs, 6 ounces at birth, the first of seven sons to Irish Catholic parents. For most of my life I was lean and reached 5 feet, 11 inches, 143 lbs when I entered college. Throughout 4 years of college and 2 years of grad school, I never had a car, and walked everywhere. I was physically active in sports. I entered the military in 1980 at the same weight. Over 20 years in the U.S. Navy..My responsibilities were largely administrative, in the healthcare field. I was a hospital administrator and information technology executive.

Twenty years later, I retired from the military at a weight of around 190, the max allowed for my height. During that time, my cholesterol, BP, and liver enzymes started to increase. I was put on BP medicine and statins, and received nutritional and lifestyle counseling many times. I also developed a lot of calcium oxalate kidney stones, and probably passed 20 between 1980 and 2000. I was told during that time that I probably was developing diabetes, heart disease, and fatty liver disease, but that the latter it could be confirmed only through biopsy. I turned down a biopsy at that time, as there really was no definitive clinical treatment for cirrhosis at that time.

In 2005 I experienced angina and had a heart stent placed in one of the branches of my left descending coronary arteries, with excellent results. Around 2010, I had 17 more kidney stones removed by laser lithotripsy and basket. Interestingly, I was also diagnosed around that time with thrombocytopenia, as my platelets dropped to about 70,000. On the follow-up CT scan after my kidney stone surgery, they discovered portal hypertension and highly suspected liver cirrhosis from fatty liver/NASH. This was confirmed by liver biopsy through my jugular or subclavian vein (not pleasant). I was told that not much could be done; that there were drugs in the pipeline.

I agreed to a double-blind Phase IIB clinical trial for Galectin, which required bi-weekly IV infusions for a year. Eventually, I was told that I had received a low dose of Galectin. Overall study results showed the infusion was safe, but it did not lower my portal hypertension, fibrosis scan, ultrasound, or CT results.

My MELD score is around 14 and currently receive hepatic follow-up at Hershey Medical Center. My liver cirrhosis is compensated, but will likely move to uncompensated over time. The end will not be pleasant and may involve encephalitis.

Given that I weigh now 320 lbs, am diabetic type II taking Tresiba, Humalog, and Januvia for diabetes; and also have cardiovascular disease (stent plus beginning of CHF), and now Stage III B kidney disease, anemia, and thrombocytopenia, I am not a candidate for a liver or kidney transplant. Kaplan Meier survival curves would suggest I have about 5 years left. I intend to go out with a bang on my own terms.

Morale of the story: stay active, exercise, eat well, and get good sleep. There is only so much clinicians can do for your health.

P.S. re statins, I was on Lipitor/Crestor for years and it worked well, but for those with liver cirrhosis, check with your clinician, as he/she may want to move you to Zocor based on evidence based medicine.

P.S. Over the course of my life, I probably never drank more than 10-20 drinks per year.

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ScaryQuestions

Wow ,

Thank your for telling your story.

Hope you stay strong.

Enjoy life as much as possible

Kind regards 😊

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