Biliary System

Posted by crystalfaye @crystalfaye, Sep 15 8:27am

Good morning to all. I need your input. Have you ever had a bile duct issue that did not show up on diagnostics testing? If so, how was it finally diagnosed? My ALT and GGT are extremely high. My bilirubin is normal as are the other two liver enzymes. I have had an ultrasound and an MRI-MRCP but no issues were found. I am three months post liver transplant. I have so many issues that direct to trouble with my biliary system. Chronic itching, nausea which sometimes leads to throwing up of bile, shortness of breath, and my tremors have become more intense. Your input would be greatly appreciate! Thanks!!!

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@crystalfaye, It is my most sincere hope that since you posted this discussion 2 weeks ago that you have had the opportunity to consult with and be examined by your transplant doctor. Surely your lab numbers and scans must indicate something that will give the doctors an indication for what isn't the cause for you digestive issues – and lead to another route for examination/diagnosis.
My experience with ugly bile duct issues were: 1) I had a liver disease named Primary Sclerosing Cholangitis (PSC) which affects the bile ducts, 2) Prior to transplant, my local transplant team inserted a stent – but it slipped out of place and they chose to remove and not replace the stent. 3) I was suspected to have cholangiocarcinoma and inactivated from the active transplant list. When my local team was unsuccessful in obtaining tissue for biopsy, they referred me to Mayo Rochester because of Mayo's reputation and leadership with PSC. ( I did not have cholangiocarcinoma and was reactivated on the transplant list) 4) A year after my transplant, my newly crated bile duct slipped into a gap in my intestines and I was hospitalized at home with sepsis. Then traveled to Mayo for surgery to repair the gap in intestinal fold.
Crystal, Did you have intestinal issues before needing a liver transplant? Was your cause of liver failure a bile duct related condition? I wonder if these are playing a role in your current circumstances.

What are your liver transplant doctors telling you about this?
And do they know how miserable you are? When is your next appointment?

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