Monday, February 20, 2012

Blogging from Vandy, Day 3

Today should have been called “Where We Smack you in the Face with Reality.” Everyone so far has been gentle and positive and upbeat, so we were just expecting more of the same out of this day. We woke up and got here at a reasonable time, got some cash (I’m not sure why. Jay just said we needed to stop at the ATM), got me some coffee, and headed to the clinic.

Our first encounter was the Jennie, another awesome nurse (they’ve all been awesome…I thought I should point that out), whom we later found out also lived in Lancaster, CA while working for the aircraft industry. She was totally precious and reassuring. Then we met with a Resident who works with the surgeon, and he did a “talky” exam as well as a physical exam. And then the surgeon came in. He was wearing a bow tie, so we clearly liked him right off the bat, and we were expecting that he and his bow tie were going to give us the happy face like everyone else has.

And then he told us that he saw some things he didn’t like from Tuesday’s CT scan…the possibility of bile duct tumors (cholangiocarcinoma, cf. Walter Payton). The good news is that the radiologist wasn’t concerned and Jay’s tumor markers have never been of concern, but the surgeon wants to meet with a whole slew of people next Tuesday afternoon to talk more about it.

Don’t get me wrong. The surgeon was awesome, but he also doesn’t need to be putting a liver into a patient for whom transplant is contraindicated. That’s not fair to anyone. There are protocols for treatment of PSC with cholangiocarcinoma, and we know a little bit about those, but we’re not there yet (and hopefully won’t be).

So we should know next Tuesday evening about what the pile of experts say about the possibility of tumors (the indicators that concern the surgeon are a brighter section of the liver on the CT scan and the atrophy of the left lobe of the liver). He wasn’t willing to blow any sunshine for us, which is a blessing and a curse, I guess. I just sort of kept making grunty noises in response because there wasn’t much else to do. Crap.

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