Wayne, Why Are You Doing This - Really?

I am a liver patient and the experience led me to want to do what I could for other liver patients

A:

On the morning of December 23, 2010, after having my gall bladder removed, I was shown a picture of my liver and told I had a stage 4 liver cirrhosis. It was a powerful and frightening moment – one that is seared into my memory. And one that began more than a half-decade of tests, misdiagnoses, and, eventually, lifestyle changes.

liver-image.jpg

I was astonished that morning to learn that my case was pretty typical. Cirrhosis, the final stage of liver disease leading to liver failure, is commonly reached without any warning symptoms. I remember very clearly my doctor’s words: “I’m sorry, but we have nothing to offer. There is no treatment.” My vision of my liver was that of a deadly beast that would kill me. Being told that losing weight and exercising could help didn’t inspire.

Later, the pathology report came in and showed that I did not have cirrhosis, not even fibrosis. Shocker. But in hindsight that report was an error: In 2014 after a series of blood tests I was diagnosed as having cirrhosis as a result of hemochromatosis. That was certainly a blow but at least this kind of cirrhosis, I was told, was potentially manageable with phlebotomies. And over time I had seven liters of blood drawn.

I’m an engineer, so learning about the beast was natural for me. I made it my goal to understand the details. I sought second opinions. I read the research. I got my biopsy slides and got a pathologist to sit at the microscope with me and explain the nuances. Eventually, assuming possible liver failure, I got a referral to a transplant center and went through yet another analysis. I was told I actually don’t have hemochromatosis but I’m a cirrhotic NASH (non-alcoholic steatohepatitis) patient.

By then I understood the diagnostic challenges so I was more prepared than most people for what I heard. And because of my research I had internalized the message of the importance of lifestyle change and weight loss — and I was determined to do everything I could to defeat the liver beast.

The result: I’ve lost 45 pounds with a healthier food strategy without feeling hungry or deprived. Learning about vegetables I’d never tried has been an adventure. Not eating juicy steaks, sugary deserts or other foods I had once loved is doable with a clear goal in mind.

The payoff came during my recent biopsy: All of the relevant tests looked good, and my disease doesn’t appear to be progressing. My wife and I celebrated with a salad.

The tests and various diagnoses haven’t been easy, nor has changing my lifestyle. But I’ve managed to avoid backsliding because I had my research and knew that change could help. For now I’ve shackled the liver beast in my belly, though I can’t help but wonder if yet another twist lies ahead.

Showing 2 reactions

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  • Wayne Eskridge
    commented 2018-07-17 12:14:17 -0600
    It is such a blow to learn that information like that isn’t given to the patient. I don’t understand how that ever could happen but it comes up in patient stories far too often. Just another reason for why you have to be your own patient advocate. A lesson here, you own your medical information. Always ask for copies of everything and keep your own files then ask questions.

    Wayne
  • Cherie Moore
    commented 2018-07-16 15:29:38 -0600
    My grandmother, mother and brother had this disease and died. I literally ran to a doctor to test my blood 4yrs. ago after the death of my younger brother and was told I do not carry the gene for this disease. Recently had hernia repair surgery and got an unusual bill from pathology. Called about the bill and found out surgeon had biopsies done on my liver, knew I had this disease and never said a word to me or my husband. If I had not called about the bill, I never would’ve known. Now, I start down the road of this journey to save my life. Your information helped me extremely well and I can’t thank you enough.

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