First-hand accounts from people who have primary biliary cholangitis (PBC)*
Ally, Cleveland, OH, diagnosed with PBC
My name is Ally and I am a special education teacher in Cleveland, Ohio. I have 4 beautiful children, a wonderful husband, 2 loving dogs, and 2 very sweet cats. I also have PBC.
Getting diagnosed with PBC was a difficult and confusing process for me. It started with a routine physical where my doctor tested my liver function and the results showed that something was wrong. From there I had to go to several follow-up doctor’s appointments and saw a specialist so we could understand why my test results were showing damage to my liver.
Throughout the process of finding out my diagnosis, both my doctor and the specialist I went to asked me several times about my drinking habits. They told me that liver function test results like mine were usually a sign of alcoholism. They wanted to know if I was secretly drinking a lot. I kept telling them that I was not a heavy drinker, and I felt like they were not listening to me. It was a very frustrating time.
After a while, the doctors told me that my liver tests were abnormal because I had something called “fatty liver disease.” It’s a common condition and I thought I would just have to be more careful about eating well and exercising more. My family and I could just continue with our lives and I would be OK.
At the time, my family was planning a big vacation together. On the day that we went to go pick up the rental van we were going to use for travel, my phone rang. I was with my husband Brad and one of my sons at the car rental company. When I answered the phone, it was a nurse from my doctor’s office calling to schedule a liver biopsy. I didn’t know what she was talking about. I told her that the doctor hadn’t said anything about needing a biopsy for my fatty liver disease.
“She said, oh no honey, you don’t have fatty liver. Didn’t the doctor tell you? You have PBC.”
I didn’t know what that was and she told me that it was very rare and there was no cure. I was standing in the parking lot with my 10-year-old son right next to me when she told me the news. I started to cry and was very upset. My son got really scared and started to cry too. I wish he had never seen that because I think it really affected him. It was a terrible way to find out that I had PBC.
“Our whole world was turned upside down in that moment.”
The nurse told me not to search for information on the Internet because it could be inaccurate and scary, and that I should just wait until I got back from vacation to come in and talk to the doctor to get the facts. I was too desperate for more information to wait, so I did go online to search for PBC. At the time, there was a lot of misinformation about the disease that was very frightening which just made the whole experience worse. I wish there had been better educational resources available to me at that time.
Since then, I’ve learned a lot more about my PBC. I started taking medicine to treat my PBC, and I know how important it is to get my liver function tested. I am my own best advocate, and I have my family to support me.
When you have a rare chronic illness, it is really important to understand what you need to do to manage it. As a mom, it can be hard for me to put my own health needs first, but I know that I have to.
“… The best way to take care of my family is to take care of myself…”
*Formerly known as primary biliary cirrhosis.