Year diagnosed with PBC: 2010
Hola and hello! My name is Pilar, and although my parents are from Puerto Rico, I currently live in Texas with my husband and children. I have 2 sons, ages 18 and 20, and a close-knit family that I love very much. In 2010, I was diagnosed with primary biliarys cholangitis (PBC).
Interview conducted in October 2016.
This is my story.
Ironically, my diagnosis came after I made some pretty big life changes in an effort to get healthier. First, I quit smoking. Then, I decided to have gastric bypass surgery to lose weight. After the surgery, my doctor noticed that my liver enzymes were elevated and wouldn’t go down over time. We checked the enzyme levels every 3 months for a year, and my doctor finally sent me to a hepatologist who did some other tests and broke the news to me that I had PBC.
By then it was 2010 and I started having symptoms. My body ached, my joints hurt, and the fatigue I had got worse—it was a hard time.
“I was like, ‘It can’t be, I don’t feel anything! What are you talking about? What is PBC?’ I had no idea.” — Pilar
For me, what helped most was finding support around me. My family and friends are there for me, and I count on them for a lot. As an example, even though they don’t live close by, my sisters make the effort to join me each year for fundraising walks I do for the American Liver Foundation. I am captain of Team Vida. Soon after I got my diagnosis, I joined the PBCers group and have been an active member ever since.
I also think it is really important to be proactive with my doctors and to stay on top of my treatment. Between my job, my family, and all the activities I do, it can be a challenge to take my medicine on time every day and to remember to go to all my doctor's appointments. The fatigue I feel doesn’t help, so it’s important that I stay focused on my health needs.
“Emotionally it was like a little roller coaster—you would get depressed, and then you would get anxiety, and then you would be okay.” — Pilar
Now I have a system to keep myself organized. I use a pill case to remind me to take my medicine every day, and I use a calendar or my phone to remind me of my doctor’s appointments, including my liver doctor every 6 months. It’s important to check in so that I can make sure my medicine is working properly. For now, I’m looking forward to retirement and am hoping for the best for the future.
“You have to be proactive. There’s only one you, and you have to take care of it yourself.” — Pilar
All participating parties, including patients, physicians, and experts, were compensated by ICPT.