Laurie is a Patient Ambassador, which means she shares her experiences of living with primary biliary cholangitis (PBC) at special educational events.
Photo by Emily Blincoe.
My name is Laurie. I have heard other PBCers talk about their long, frustrating journeys to a diagnosis. My diagnosis was pretty much the opposite of that—it all happened in fewer than 8 weeks.
In January 2003, I made an appointment to see my primary care doctor after 2 unusual incidents. The first was throwing up after having only 2 drinks on New Year’s Eve and the second was feeling debilitatingly fatigued after hanging new curtains in my apartment.
My doctor did routine blood work and he said that my liver panel results were “a little out of whack.” We covered all of the topics that would indicate more common liver diseases (history of IV drug use, excessive drinking, tattoos). After another round of blood work, my labs came back even higher, and I was sent to a liver disease specialist.
The specialist asked me a series of very specific questions. Did I itch? Was it a surface itch or did it feel like the itch was deep under my skin? Did I have dry, scratchy eyes? Did I wake up in the middle of the night with my tongue stuck to the roof of my mouth? Did I feel nauseous after I ate? Was there a history of autoimmune disease in my family? When we were done talking, he said he suspected that I had PBC. A liver biopsy confirmed the diagnosis.
I went into what is best described as an existential tailspin. Why did this happen to me? What did I do to cause this? What did I want to do with the 10, 20 good years I had left? My diagnosis prompted me to search deep and figure it out. As a result, I was in a really good place when I started dating the love of my life.
I believe attitude is everything when it comes to life and PBC, especially when it’s at its worst.
Eric was a friend long before my diagnosis and remains my best friend and love to this day. From the start, I made sure to be open and talk about what was happening with my PBC. I have promised him to do my best to manage my food choices and energy to make sure we have as many good days as possible. I let him know there will be bad days as well.
PBC can be a tricky companion, so I made the decision early on to find doctors affiliated with a teaching hospital and ask them a lot of questions. Occasionally, I’ll even practice difficult questions ahead of time so I’m comfortable verbalizing them.
All participating parties, including patients, physicians, and experts, were compensated by Intercept Pharmaceuticals.
So, I’ll leave you with this: none of us chose this disease,
but we can choose how we deal with everything that comes with it. My hope for you is that you lead a very happy, hopeful life—because of your PBC.
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