My Diagnosis Journey to PBC

When I was in my late 20s, I started experiencing a lot of back pain. I felt very stiff all the time. I felt itchy a lot, but I have always had allergies. I also struggled a lot with fatigue.

At the time I was working nightshift as a respiratory therapist. My shift started at 6:45 PM and ended at 7:15 AM. I worked in the Intensive Care Unit and the Stepdown ICU a lot and helped where I could. I always thought that these symptoms were related to running around a hospital all night caring for patients.

My coworker finally made me find a new primary care physician to be seen for the back pain I felt a lot. I just sort of figured I probably had a kidney stone or even a UTI and that it wasn’t a big deal. I turned out to be very wrong.

My doctor was worried and ordered many tests

My new PCP ordered blood work, x-rays and a CT scan of my abdomen. Shortly after, my lab work began coming back with a lot of irregularities. My liver enzymes were elevated. From there she ordered a liver ultrasound and referred me to a gastroenterologist (GI). My ultrasound came back clear with no significant findings.

When I first met the GI physician referred to my case, I remember he was really worried. He told me, “Because you are only 31, I am going to be very aggressive with your care.” He ordered a lot of lab work. I remember thinking “How many more vials was the phlebotomist was going to take?” when I was at the lab. I think it was somewhere around 11 vials of blood in the end.

From there, he ordered a liver biopsy. He was determined to figure out what was going on with my body.

Anxiously waiting for the results

After the biopsy was performed, in the beginning of December 2019, it was just a waiting game for me. Waiting for all the results to start reporting back and waiting until my next appointment with the gastroenterologist. It felt like the longest month of my life.

When I finally started seeing results post to my patient portal, I started researching. I tried to learn everything I could about the tests that came back abnormal. Working in healthcare for 5 years at the time, I was worried. I was scared. I wanted to know what was wrong with me.

Looking back at it now, it probably was not my best idea. I think Googling just made me worry more. But at the time I felt I needed to be informed.

Finally receiving a diagnosis

When I finally had my follow-up, I remember I walked into the office and I asked, “Do I have autoimmune hepatitis, or do I have primary biliary cholangitis?” I remember my doctor looked surprised when I asked him that.

That’s when he confirmed my biopsy showed that I had primary biliary cholangitis. And on December 30, 2019, I took my first dose of Ursodiol, the first line treatment for PBC. That was the day I decided I was going to fight back against this disease and do everything I possibly could to win.