In honor of Rare Disease Day today, I’d like to share how I emotionally cope with living with the rare disease, primary sclerosing cholangitis (PSC) journey. I also have written a list for you at the bottom of this post sharing my top three favorite rare disease organizations! What is Primary Sclerosing Cholangitis? I live […]
My PSC and Vancomycin Advocacy Plans and How You Can Get Involved
It took me ten months to find a doctor who would prescribe me vancomycin and one year to finally find a hepatologist who was willing to help me pursue an official PSC diagnosis via liver biopsy. This is a long time, and I know many others have waited much longer. It doesn’t have to be […]
My Liver Biopsy Experience and Results
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 […]
My FibroScan Experience and Test Results
In November 2019, I had my first FibroScan. This noninvasive test is similar to an ultrasound because the technician passes a probe over your liver, pressing in between your ribs. How Does a FibroScan Work? At the end of the wand is a button that sends a pulse through your liver to check the elasticity […]
Why I Decided to Pursue an Official PSC Diagnosis and How I Did It
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 […]
Starting Vancomycin to Manage My (Probable) PSC
My gastroenterologist, Dr. Yinka Davies, is a PSC expert. In fact, she studied under Dr. Kenneth Cox, the doctor who discovered the use of vancomycin for PSC! Since Dr. Davies is familiar with vancomycin and regularly prescribes it for her PSC patients, she suggested I try it. At first, I was hesitant because it was […]