Why I Finally Decided to Pursue an Official PSC Diagnosis

In January 2019, I moved from California to Tennessee. My husband had landed a great job in the Chattanooga area, and we were excited to move.

Once we were settled, I started looking for new doctors to make up my local medical team. I decided against finding just any hepatologist—I wanted one who was familiar with both PSC and vancomycin. The reason? After a few years of living with an unofficial diagnosis, I was beginning to think I should pursue an official one.

2 Reasons Why I Wanted an Official PSC Diagnosis

There was a nagging itch in the back of my mind making me want to pursue more invasive testing to officially confirm PSC. I was 95% sure I did have it, and my GI was almost certain as well, but that small 5% made me wonder “What if I don’t have PSC after all, and I’m taking vancomycin for no reason?”

Additionally, all the local Tennessee doctors I met with had a difficult time believing that I had PSC without an official diagnosis record.

Searching for a Hepatologist Who Would Prescribe Me Vancomycin

I started calling local hepatologists and GIs, asking if they prescribe vancomycin for their PSC patients. Many of these doctors I spoke with were not familiar with vancomycin for PSC, or they spoke to me as if I had no clue what I was talking about.

During my search, I met with a potential hepatologist’s nurse in person. I explained my PSC situation, and she looked so confused as I told her my story. After I finished, she said, “I really don’t know that much about… PCS.” It was obvious she hadn’t heard of PSC before, so I crossed that doctor off the list.

Frustrated woman sitting on couch with head in hands

Later, I met with another potential doctor and his nurse. The nurse admitted that at their practice they were not familiar with prescribing vancomycin for PSC. I kindly offered to email them some published papers, and she replied, “No, I don’t think the doctor would be interested in that.”

I scratched their name off the list too.

Finally Finding a Doctor Who Would Help Me

Eventually, some locals referred me to a nurse practitioner of a gastroenterologist. She had worked with several PSC patients before, and although she wasn’t familiar with vancomycin, she was willing to get on the phone with my California GI, learn about it, and prescribe it for me.

She was also willing to help me schedule some liver tests I hadn’t tried yet. Read the next two posts about my experience with a FibroScan and liver biopsy.