Read Tina's story about how she lives well with primary biliary cholangitis (PBC) by being an expert on her symptoms, labs and new “normal,” all while working with her team of health care professionals: realwomenrealstories
How I learned to self-advocate and discovered myAbout two decades ago, I had a routine blood test for a life insurance policy. I didn't think much of the test. I was healthy, after all.
Initially, my doctor couldn't determine why my liver enzymes were elevated, but because they weren't dangerously high, she decided that we would test again in three months. We continued testing and watched as my levels crept up slowly every three months. Eventually, she referred me to a hepatologist, who diagnosed me with. Since I had never heard of PBC, I became emotional and scared of not knowing what lay ahead.
Once I received my diagnosis, I started taking a prescription medication along with a cocktail of vitamins. I also made the vital decision to revamp my team of health care professionals and started seeing a different hepatologist who I felt more comfortable with. If you have PBC, or any chronic condition, make sure you do your homework when finding the right health care professionals for you. I can't stress it enough –turn to credible organizations when you search for a hepatologist.
I also take an active role in my health care by tracking my lab results and symptoms, and not just relying on my doctors to have this information. This way, I know what's normal for me. For example, my hepatologist sees hundreds of patients per week. If he looks at my liver enzyme numbers and thinks they are high, I can hand him my spreadsheet, showing him that while a certain number may be high for the lab, it's actually a lower number.
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