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To Live r Die

My Situation

So here I am. For the past 25+ years I’ve always had a love for food – good and bad – or bad for your liver anyway. As a result, this has left me overweight, and lately obese. I’m 6′ 0″, and at my peak – weighed in at over 290 lbs. This was as recent as late April of this year (’24).

We all know the perils of obesity; high blood pressure, joint issues, cardio vascular issues, and on and one. I was managing these issues and really had no qualms about my weight or appearance. It didn’t seem like anyone else did either. So carry on – right?

However, over time, I have a condition called MASH (formerly NASH). It’s an acronym for Metabolic Dysfunction-Associated Steatohepatitis. This is

inflammation of your liver caused by excess fat cells in it (steatotic liver disease). Chronic inflammation causes progressive liver damage. MASH resembles hepatitis caused by alcohol use, but it stems from something else. It’s most often associated with overweight, high blood lipids and high blood sugar.

I had been having some moderate nausea over the previous several years – off and on, and was seeking some answers. I had tried elimination diets, supplements, but nothing seemed to work – and I continued to gain weight, without resolving the nausea.

This past spring I decided to make a visit to a gastroenterologist. And he, of course, wanted to perform an endoscopic exam to see if he could determine a cause – since I’m 59 (58 at the time), he thought it would be prudent to perform a colonoscopy at the same time (two birds, one stone). There were some issues with these procedures, nothing serious, and not abnormal for a person my age and weight. But no answers for the nausea. This lead to an ultrasound, to look for an disease with my pancreas or gall bladder. Results – all healthy – no issues with either. But……..my liver was greatly enlarged, with fatty deposits, and elastography indicated fibrosis. Serious red flags!

The gastroenterologist immediately counseled me on my condition, urged me to immediately begin lifestyle changes to reduce my weight, and referred me to a hepatologist. This was in late April, early May. He likely saved my life, and I’m grateful.

On meeting the hepatologist, we scheduled and completed a liver biopsy. This was done to help me qualify for a newly approved treatment for MASH with a drug called Rezdiffra (resmetriom). This medication is the first and only approved and shown to halt and even improve fibrosis with people suffering from MASH. Great news!

Bad news. The biopsy showed more damage than the ultrasound. I did not have fibrosis, but cirrhosis. Stage 4, which is the final stage. It made me ineligible for Rezdiffra, and placed a whole new perspective on life.

Cirrhosis is scary – because it has a stigma and it’s means your liver is scared beyond repair. The liver is a resilient organ that performs life supporting functions – and much of the abuse and damage we do to our liver is repaired and regenerated, that’s until there is so much damage and scaring that those portions can no longer repair themselves. There are two categories that describe this condition: “compensating” (which is where the liver continues to repair, recover and regenerate) and “decompensating” (which is where the liver can no loner repair itself.

At stage 4, I’m in the decompensating phase. I don’t how long I’ve been in this phase, but it has progressed to Stage 4. My lament.

This doesn’t necessarily mean I’m going to die soon. It sounds bad – and it’s serous, the MOST serious I’ve ever faced. But there is hope – there is light!

I’ve made great strides, and do date I’ve lost over 50 lbs. I’ve done this though adopting a strict diet (Mediterranean), monitoring calories, cutting the fat, sugars and exercising. I have not used Ozempic, or the other available aids – but I have not needed them. I would if I did. I will have to continue my weight loss, with a goal to be around 185 lbs. by next May. This will place me at a healthy BMI and ensures that my diet is not creating any further damage to my liver with unnecessary fat, sugar or toxins. It sounds hard, but its really not if ones life is at risk.

With this new challenge, everything is measured, which is good – because we can use these measurements to score progress or regression. I’ll never improve from Stage 4 – and this puts me into another phase of monitoring. I will need to have regular monitoring for things like liver function, enzymes, how I clear bile, kidney function, inflammation and markers for cancer. The good news is I do not have cancer, the bad news is I now know I’m at an exponentially higher risk of cancer and must make positive changes with diet and exercise.

I will now, at least for starters, be closely monitored every eight weeks. This means lots of bloodwork to check for changes, ultrasounds to monitor for changes in scarring, damage or cancer, and regular endoscopy exams. These are all to monitor and rate my condition on a MELD score. This is another acronym for Model for End stage Liver Disease. It is a range from 6 to 40. It is used to determine condition, need and eligibility for liver failure and transplant.

My initial score from my initial testing is 8. This is good news. 15 is the threshold that requires a liver transplant. So for now, the remaining healthy portion of my liver is doing an adequate job of keeping me alive an well. Along with the MELD score criteria, I will now have to be aware of any symptoms of trouble that include – jaundice, hepatic encephalopathy, ascites and fatigue. MELD scores rarely improve, but with my current status, I have enough healthy liver to maintain an 8 and keep it from progressing. Hard work ahead. Don’t listen to the internet – my “average” life expectancy is 4-14 years. With good care and dedication to my plan, along with the healthcare team we are assembling, that includes the gastroenterologist, general practitioner, rheumatologist, hepatologist and nutritionist – I’m motivated and well on the path to being has healthy as I can for what I hope to be another 20 plus years.

6 responses to “My Situation”

  1. you can do it!!!

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  2. Thank you for keeping us in the loop! 💜Your news is hopeful and full of the faith needed for you and your family. Y’all will be in my prayers.

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  3. All the best to you, my friend! Cooking has become my hobby so that I will stay interested in healthy food choices. I am sure your liver will hang in there and stay happy with all of the good choices you are making! Love, Mary Pat

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  4. You got this!

    Will be praying for your healing. For now live life to the fullest…laugh, enjoy the food you eat and don’t resent it, travel for fun, continue your friendships and love, love, love. ❤️🙏🏻

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  5. malisasayehotmailcom Avatar
    malisasayehotmailcom

    your blog is awesome! I love your determination and your positivity. You keep up the good work. You have a good team and a good head on your shoulder so I know you got this! Thanks for letting us follow your journey. I lost my brother to cirrhosis of the liver. Unfortunately, he wasn’t willing to make any changes. So, he was gone way too soon. I often feel as if I can follow suit of that and this will give me the information and determination to make a change for myself. Thank you, Kevin!

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  6. Thank you for sharing your story, Kevin! I’ve been a long-time admirer of your writing, and it’s truly inspiring to follow your journey through these beautifully crafted blog posts. It’s heartwarming to see how you’re prioritizing your well-being while allowing us to feel connected to you as both a brilliant mind and a cherished friend. Please continue sharing your insights and your path to health and longevity – your words bring so much joy and inspiration to all of us!❤️❤️❤️

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