The Death of Hope: A PBC Update

You may remember in my recent post, “Testing, Testing“, I mentioned in that post that my doctor was so impressed with my Fibroscan results that she was not convinced that I have PBC.  Well, those results came in today.  After foolishly allowing myself the smallest bit of hope, the PBC diagnosis was confirmed.  I am stage 1-2 (out of 4 total stages), which is actually really good.  This means that we have caught the disease early and hopefully we will be able to slow the progression of this terrible disease.

I am mildly upset with my gastroenterologist, who was in disbelief that this could possibly be PBC.  Mind you, I did not know a damn thing about PBC before diagnosis.  My rheumatologist originally diagnosed me by positive AMA  and elevated Liver Function Tests (LFTs), but that was not enough for this doctor.  She had me convinced that my case is a false positive, and worse than convinced – I had hope, and I rarely allow myself that luxury.  I’m disappointed in the results and I’m disappointed in myself for having hope in the first place.

On the bright side, according to all of my recent results, my case of PBC is well-managed.  I am a responder to Ursodiol, the only FDA-approved medication for the treatment of PBC.   My liver levels are all still in the normal range – thank goodness!  My Fibroscan and liver biopsy both show that I have zero fibrosis or damage to my liver so far, which is absolutely amazing!  My liver doctor wants to see me every 6 months for follow-up labs and scans, starting next month.

I want to take a moment to thank all of you that have shared this journey with me so far.  So many of you have prayed for me, kept me in your thoughts and checked in on me over the last few weeks. It means the world to me to have this kind of support system behind me.  Love and light to each and every one of you now and always!

7 thoughts on “The Death of Hope: A PBC Update

  1. I’m sorry that the PBC was confirmed. What is pbc if you don’t mind me asking

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    1. PBC is Primary Biliary Cholangitis. It is an autoimmune liver disease that will eventually put me on the transplant list.

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      1. I’m very sorry to hear that. What can they do to help slow it down?

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      2. I’m on a medication that slows down the progression and so far is working great.

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      3. That’s amazing! Hope it works for a long time. I’m currently on a medication like that for my lungs.

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      4. Thank you so much for your kind words. In hope yours works a very long time as well! Love and light to you sweetie!

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      5. Thank you so much 😊❤️

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