Leslie S.

Primary Biliary Cholangitis

I was diagnosed with Primary Biliary Cholangitis in 2007 at the age of 43. I suspect that I had it long before that as I had already been diagnosed with Hashimoto’s Thyroiditis in 2005 and had been told I had high liver enzymes. After an ultrasound of my gallbladder and liver I was told they didn’t see any reason for the enzyme elevation but I should repeat the labs in 6 months. Fast forward three years I moved to Austin, TX and during the process of establishing new doctors my endocrinologist suggested I see a gastroenterologist/hepatologist due to excessively high liver enzymes. I ignored her another 6 months and then reluctantly went after she told me she would “fire me as a patient” if I didn’t heed her advice.

That’s where my PBC story begins.

Needless to say I was dazed and confused. What was this mystery disease and how could this be happening? Something my physician said the day he gave me my diagnosis stuck with me. He said, “we can be talking about a liver transplant in the next 10 years or you can live your life without any symptoms and minimal disease progression.” At that point I made the decision to do everything within my control to live a healthy life and not let my PBC define the outcome of my life.

Fortunately, my PBC responded to the medication and I have been mostly asymptomatic since then. I exercise 5 days a week, eat a mostly whole food diet, limit sugar, and stay away from processed and boxed or frozen meals. In addition, I take vitamins and supplements with the approval of my physician. Last year, in 2017, I had another liver biopsy, after presenting with some late afternoon fatigue and brain fog. The biopsy showed slight progression of the disease, but I’m not letting that get in the way of living life. I pay close attention to my body and I realize that there may be a time when I have no choice other than to slow slow down, but until then I’m living life and loving every minute.

Leslie’s advice? Take care of yourself. Listen to your body. Join a support group. Try your best not to fear the future so much that you aren’t living in the present.