Year diagnosed with PBC: 1998
I’m Sharon. I’m a retired teacher, a mother and a grandmother, a wife, a volunteer, a dog owner, and a traveler. I’ve also been living with primary biliary cirrhosis* (PBC) for years.
*Interview conducted in July 2015, before the widespread adoption of the term "primary biliary cholangitis."
This is my story.
I got my diagnosis shortly after my first husband passed away. I was fortunate that I had lots of support already from my teaching colleagues, family, and children. When I began seeing the man who is now my second husband, I told him about the disease, and he spent a lot of time learning about it, too. It means a lot to me to know he wants to be involved.
“Please let everybody know there is hope, and all you have to do is look at the bunch of us who are part of the PBCers. We have a lot of stage 4 people who have been stage 4 for many years.” — Sharon
An important step in my PBC journey was when I began meeting people, going to conferences, and becoming active in the PBCers Organization. I like to speak to people who have just been diagnosed and tell them, “I know exactly how you feel because we all felt that.”
When I was first diagnosed, my gastroenterologist wasn’t sure what kind of liver disease I had. He started me on treatment, and when the treatment helped me, we knew it was PBC.
“Of course I was hysterical and only heard half of what [the doctor] said. All I heard was liver disease. My daughter was with me the whole time, so she was able to talk to me afterwards and say, ‘Well Mom, maybe it’s not so bad as you think it is.’” — Sharon
I believe in being proactive with my PBC. I keep all my medical records and blood test results on my computer now, and I learned how to read them so I can keep an eye out for any problems. I always tell other folks with PBC to choose a doctor who’s easy to talk to. Ask questions and demand copies of notes and results. Keep your medical records—you’re entitled to them.
I take my medication, take care of myself, and get my liver function tests (LFTs) repeated every 3 to 6 months. My medicine is working, so my LFT results are good. And I have a lot of good things to look forward to.
“I have 3 bar/bat mitzvahs next year. This grandmother is going to be one busy lady.”— Sharon
All participating parties, including patients, physicians, and experts, were compensated by ICPT.