Primary Biliary Cirrhosis (aka Primary Biliary Cholangitis) Posts & Links

Posts

These are posts on this blog about primary biliary cirrhosis, both the disease itself and my experience of it.
Varicose Veins in My Esophagus?

My first post on having PBC.

Primary Biliary Cirrhosis: Basics, 1

What is PBC, possible causes.

Primary Biliary Cirrhosis, Basics 2: Triggered Self-Destruction & the Loss of Self-Tolerance

Auto-immunity.

Primary Biliary Cirrhosis, Basics 3

Sources of information.

High ALP + High GGT + High IgM + AMA = PBC

Getting a diagnosis.

You Give Your Blood, You Pay the Bill, So Get the Results!

How I should have been diagnosed earlier.

PBC: No Varices for Me. Well, Just a Trace

My first endoscopy.

PBC Re-cap by Comment

Reader responses to PBC posts.

At Risk for Esophageal Varices and I Nearly Bleed Out from a Gastric Ulcer: How Weird Is That?

My first bleed. And it well could have been a portal hypertension bleed, after all.

Another Bloody August. Mysteries and Muddles. And Hospitalists.

My second bleed.

Third Time Around: PBC, Portal Hypertension, and a Routine Bleed

You guessed it: third bleed.

Primary Biliary Cirrhosis, Portal Hypertension, and the Frustration of Knowing There’s No Way of Knowing What I Need to Know.

On exploratory endoscopy.

Primary Biliary Cirrhosis, Portal Hypertension, My Perfect Endoscopy Results and My Fourth Bleed

Was it a tear or a nick? Bloody mess, all the same.

PBC, Bleeding Varices. Bleeds 5 and 5.5. Or 6

This is getting old.

PBC Bleed 7. The Vesuvius Within Me. Crashing in the Same Car.

Really old.

Cameron’s Erosion Erupts (Again): Bleed the Eighth

Just another manifestation of a portal hypertension bleed.

How It Feels to Have an Injectafer Iron Infusion

Always Bleeding from the Same Scar: Bleeds 9 and 10

Bleed 11, An Exploratory Endoscopy, Bleed 12, Injectafer Again

My 13th — and Perhaps Final — Portal Hypertension Bleed

Links

review article (refers to 332 articles) on PBC available on PubMed [ID#: PMC2758170]

National Digestive Diseases Information Clearinghouse

Primary Biliary Cirrhosis Organization: pbcers.org

PBC Foundation

Medicine.net’s comprehensive article on PBC

University of California-Davis page on PBC

University of Alabama-Birmingham (UAB) Liver Center

Primary Biliary Cirrhosis Organization: pbcers.org

PBC Foundation

http://portal-hypertension.com/  (patient’s blog)


6 thoughts on “Primary Biliary Cirrhosis (aka Primary Biliary Cholangitis) Posts & Links

  1. I just want to say thanks for your blog and entries about PBC. My fiance was recently diagnosed and it is difficult to find information about PBC. God Bless you and all the best to you!

  2. Thank for keeping us up to date. It’s time I did as much myself, for you.
    In the autumn, I, too, had the experience of knowing I was bleeding even though there was no outside evidence of it. The ER doctor was about to pat my head in a patronizing way and send me home with “reflux” problems, when the blood made its appearance.
    After the excitement was over and many tests complete, the doctor who almost sent me home asked me how I knew I was bleeding. I told him I knew by the way I felt.

    Last month I had four more varices banded, and I’m due to have another endoscopy in six weeks to check for more. The doctor did have trouble banding a lower-down vein in the autumn. My bleeds and varices are becoming quite an issue; now I must have bandings every two months. I also developed acsites, but that is currently under control with a diuretic. My MELD score has increased by two points since December, and I’ve started passing around my booklet for donors on live liver transplant.
    And I still have not written the booklets I intended to leave behind for my children, spouse, friends. Time feels like it’s slipping away.
    Thanks for listening! Not many people understand this sort of situation, and I appreciate it that you do.
    Wishing you the best.

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