PSC Family Toolkit

A helpful guide for patients, families, and caregivers living with Primary Sclerosing Cholangitis (PSC).

:blue_book: 1. PSC Glossary: Terms You’ll Hear

ERCP / MRCP
Imaging tests used to view the bile ducts. ERCP is invasive; MRCP is MRI-based and non-invasive.

Fibrosis / Cirrhosis
Fibrosis is liver scarring. Cirrhosis is advanced scarring that affects liver function.

Ursodiol
A medication sometimes prescribed to improve bile flow and reduce inflammation.

MELD Score
A score used to assess how urgently a liver transplant may be needed.

Bile Duct Strictures
Narrowed areas in the bile ducts caused by inflammation and scarring.

Liver Biopsy
A procedure where a small piece of liver tissue is tested to assess damage or disease.

:red_question_mark: 2. Questions to Ask Your Hepatologist

  • What stage is my PSC at?
  • How often do I need liver function tests?
  • Are there symptoms I should watch for between visits?
  • Should I be screened for IBD or bile duct cancer?
  • When should I consider a transplant evaluation?

:receipt: 3. Scan & Appointment Prep Checklist

  • Understand what to expect during MRCP or ERCP (duration, sedation, results).
  • Bring notes, recent test results, and a list of medications to your liver clinic visit.
  • Post-scan care: rest, hydration, and follow-up instructions if sedated.
  • Keep a folder (physical or digital) for organizing your medical records and visit summaries.