Ana María Hunt submitted her story about how she went from near-death to life, thanks to oral vancomycin. Ana María, a 52-year old PSC patient, had been living with liver cirrhosis. In addition, she’d been experiencing debilitating symptoms including brain fog and chronic fatigue. Because of this, she’d had to stop working. Then, she started […]
3 Documents You Need to Know if you Take Oral Vancomycin for PSC
If you’re taking oral vancomycin for your PSC, there are three documents you NEED to be aware of. Understanding these three documents may help you access oral vancomycin from a physician and from your insurance. All three documents are associated with the American Association for the Study of Liver Diseases (AASLD). Let’s take a deep […]
Oral Vancomycin for PSC: How the Updated AASLD Guidance May Impact Your Ability to Access Vancomycin
In early July 2022, I learned from the American Association for the Study of Liver Disease (AASLD) that they’ll be updating their PSC Guidance to limit the use of oral vancomycin to clinical trials. Their Guidance will also state that treating IBD associated with PSC is outside their scope. If this AASLD Guidance passes, insurance […]
Oral Vancomycin Lowered PSC Patient’s MELD Score and Increased Quality of Life
Trigger warning: thoughts of suicide. This post includes sensitive topics and some which may be triggering for readers. If you need support, someone to talk to, or are currently in distress, here are some helpful resources for you: The National Suicide Prevention Lifeline at 1-800-273-8255 or you can text “NAMI” to 741-741 to talk with […]
“Vancomycin Gave Me My Life Back!” Says PSC Patient: A Story from Cholangiocarcinoma to Cancer-Free
Mandy Ulseth submitted her incredible, heart-warming, hope-giving story about her experience with vancomycin. Mandy—a PSC and Crohn’s patient—started taking the ANI Pharmaceuticals brand of vancomycin in her early thirties. When she started vancomycin, she was in stage two liver fibrosis and was also living with gallbladder cancer and intrahepatic cholangiocarcinoma. Before vancomycin, Mandy was dealing […]
3 Things That Help Me Emotionally Cope With Living With a Rare Disease
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 […]