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Feb 13 2007

The Initial Diagnosis

I was diagnosed with Primary Sclerosing Cholangitis (PSC) on September 8, 2000, at the age of 35. Primary sclerosing cholangitis is a disease in which the bile ducts inside and outside the liver become narrowed causing restriction of the flow of bile through the liver. This results in inflammation and scarring of the liver, and ultimately damages the liver cells. It’s not good, and while there is no cure, the disease can be succesfully “treated” via a liver transplant in many cases.

Like many people diagnosed with PSC, I was not originally experiencing symptoms of any kind. In fact, I was feeling fine. I had piqued the curiosity of my family physician because I had recently been declined for life insurance coverage following peculiar results on the standard screening bloodwork. Specifically, the insurance company believed that I was a chronic drinker since several of my liver enzymes were well outside of normal ranges. I’ll never forget the very condescending and patronizing call from the insurance company representative asking about my “drinking habits.”

  • THEM: “So, how many drinks DO you have every day?”
  • ME: “Well, none really.”
  • THEM: “Uh huh…is it possible you are forgetting how many? Have you ever had long periods of time you can’t account for, or have you ever blacked out?”
  • ME: “What? Blackouts?!? No, I don’t drink.”
  • THEM: “Uh huh…maybe you should talk to someone. I can refer you to a counselor.”
  • ME: “I don’t think I need a counselor. I just want insurance.”
  • THEM: “Uh huh.”

Let’s just say I didn’t get insurance then and I only have group insurance now through my employer…and I still don’t drink. At this point, my physician still didn’t know what was wrong, but he knew something wasn’t right. His initial diagnosis was that I must have gallstones, but an ultrasound quickly ruled that out. He then repeated the bloodwork to validate the results, but that didn’t provide any new information either.

Well over a year later my mom was diagnosed with PSC, and when I informed my physician of this, the puzzle pieces started to come together. While PSC is generally not believed to be hereditary, my doctor recognized that my lab results were consistent with PSC and ordered an ERCP procedure. The ERCP is a delightful experience that involves running a fiber-optic tube into your mouth, through your stomach, into the intestines and up into the liver to illuminate the ducts. My results were available immediately since the ERCP displayed the classic signs of PSC: where a healthy common bile duct looks like a straw, mine looked like a “string of pearls” with constrictions every few millimeters.

I would later learn that several of the features of my experience up to this point were not uncommon to those diagnosed with PSC or other chronic liver conditions:

  1. I was relatively young.
  2. I felt fine.
  3. The first sign of “trouble” was strange lab work.
  4. I was inaccurately diagnosed or “un-diagnosed” for a lengthy period.
  5. An ERCP offered the only definitive diagnosis.

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