The nurse practitioner who ordered the FibroScan put me in touch with a hepatologist at a hospital in Georgia. I’m so thankful for my California gastroenterologist, Dr. Davies, who had several phone calls with this nurse practitioner and the referred hepatologist to help explain my unique situation.
The Hepatologist Refused to Perform a Liver Biopsy On Me
In January 2020, I drove several hours to meet this doctor for a pre-biopsy consultation. This appointment did not go at all how I expected. Instead of listening to my story and setting up the liver biopsy, he told me he would not perform it because my liver numbers were normal.
“Normal liver numbers mean your biopsy will be normal,” he said. But this is not necessarily true, especially when it comes to PSC.
On top of denying me the liver biopsy, he tried to talk me out of taking vancomycin, even though he admitted he wasn’t familiar with it! I was so shocked by everything he said, and so let down. After finally wanting to do a liver biopsy to get an answer about my possible PSC, I was now being denied and treated like I had no idea what I was talking about.
I drove home crying. I just wanted answers.
Why the Hepatologist Changed His Mind
Surprisingly, halfway through my two-hour drive home, the doctor called me back. This time, his entire tone had changed. He said that he had just spoken with Dr. Davies (even though I was out of state, she was helping me get my liver situation figured out in Tennessee).
Apparently, when I was driving home, the hepatologist had called Dr. Davies to update her on how the consultation went. She’d stood up for me and thoroughly explained to him why it was important I get this liver biopsy.
He put me on the schedule for a biopsy the following month.
My Liver Biopsy Procedure
The actual liver biopsy was not a fun experience. I got an ultrasound-guided biopsy, which meant they used an ultrasound machine to find the best place to insert the needle.
The biopsy was strange because I had to be kept awake so I could respond to verbal commands. I remember just about everything, from the cold sanitation wipe they used over my ribs, to the “X” they marked on my skin, to the actual needle diving into my liver.
I won’t go into much more detail here about the procedure because I have a four-part blog series that goes very in-depth that you can read here.
My Liver Biopsy Results
The results on my patient portal read: “Minimal focal periductal fibrosis” and, “While periductal fibrosis can be seen with primary sclerosing cholangitis (PSC), there is a complete absence of any inflammation in this biopsy.”
Ultimately, I had slight scarring (fibrosis) near the bile ducts, but no active inflammation.
The hepatologist was shocked because he was certain my biopsy results would be normal. (It felt good to be right).
How my liver biopsy results compare to other PSC patients on vancomycin
I spoke with Dr. Davies about these liver biopsy results, and she explained that my results match those of her other PSC patients on vancomycin.
She explained that the typical liver biopsy results of PSC patients not on vancomycin usually have both fibrosis AND inflammation.
The lack of inflammation in my results and in the results of others on vancomycin is suggestive that the vancomycin has stopped the inflammation, the driver of the disease.
The hepatology team at this Georgia hospital was stumped by my results because they were not familiar with prescribing vancomycin for PSC and haven’t seen any liver biopsy results of PSC patients on vancomycin. I’m so grateful Dr. Davies could provide this explanation and insight that I can pass along to you.
Now that I have my PSC diagnosis, I feel even more confident taking vancomycin with proof that it is working by stopping the inflammation in my liver.
What Are My Next Steps?
Read the next and final post to learn more about what advocacy projects I’m working on to spread awareness about vancomycin for PSC and what I’m doing to help make vancomycin more accessible.
Read the Rest of My PSC Diagnosis Journey
