# PSC Family Toolkit

**URL:** <https://forum.livingwithpsc.org/t/psc-family-toolkit/5519>\
**Category:** Life with Primary Sclerosing Cholangitis\
**Created:** [May 23, 2025, 2:43pm UTC](https://forum.livingwithpsc.org/t/psc-family-toolkit/5519 "2025-05-23T14:43:03Z")\
**Posts on this page:** 2\
**Page:** 1

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**Author:** ![ModSupport](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/modsupport/32/2255_2.png) [@ModSupport](https://forum.livingwithpsc.org/u/ModSupport)\
**Post date:** [May 23, 2025, 2:43pm UTC](https://forum.livingwithpsc.org/t/psc-family-toolkit/5519/1 "2025-05-23T14:43:03Z")

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

**📘 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.

❓ 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?

🧾 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.

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<div class="post-metadata">

**Author:** ![ModSupport](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/modsupport/32/2255_2.png) [@ModSupport](https://forum.livingwithpsc.org/u/ModSupport)\
**Post date:** [May 24, 2025, 1:10pm UTC](https://forum.livingwithpsc.org/t/psc-family-toolkit/5519/5 "2025-05-24T13:10:49Z")

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