Mayo-Day 3-The Results Show I

[Guest guest]

Today was analogous to the American Idol Results Show. The first

round of testing has been done, and now it's time to hear which

treatment plans win, and which go home.

Before I go into details, thank you to everyone for your kind words.

A big reason I'm writing this is to give insights as to what it's like

to visit Mayo. It might be useful information to someone. If you

ever have the opportunity to be referred here, please view it as

exactly that...an opportunity. These folks are THOROUGH!

I met with Dr. Gores, a fascinating man with a gift of

reducing medical jargon into language that even a simple country

bookkeeper like me can understand. If you have not already done so,

make sure you mark your calendars for next year's PSC Partners

Conference in ville. Dr. Gores is the keynote speaker, and he

promises to be outstanding.

With that, here is what we've learned so far.....

I'll start with something new that popped up for the first time a

month ago. I have symptoms of anemia: low iron, bad iron binding

capacity, low hemoglobin and hematocrit, etc. This week's blood work

confirmed last month's tests. This is all still new to me, and we

don't know yet how it fits into the big picture. Dr. Gores ordered

more blood tests, and we'll reconvene next week to address it.

Another surprise, and it underscores how thorough Dr. Gores and Mayo

are: My PSA is high at 4.0 (normal range is 2.6 or less). One would

never think that someone going in for a transplant review would have a

prostate blood test. Again, we don't know if this is temporary, an

underlying infection, or something else. I'm seeing a Urologist next

Tuesday for more.

LFTs continued their roller coaster ride, with all numbers up from a

month ago. Total bili is back to 2.0, Alk Phos is 803, AST is 71, and

ALT is 108. I still have tons of cytomegalovirus running around

inside of me. We think that caused my mononucleosis last year, and

since I'm still having symptoms, this will be treated. (Yes,

antiviral drugs can be used in PSC patients with adequate

supervision.) I have high cholesterol--nothing new there. Total

cholesterol 284, with LDL at 210, a new record high for me. Like the

doctors we heard in Denver, Dr. Gores says there is nothing wrong with

aggressively treating cholesterol problems in PSC patients. In fact,

it would be irresponsible NOT to do so.

The numbers keep my MELD score at 9, far too low to think about

actively pursuing the transplant option at this time. Dr. Gores

echoed a lot of what I heard in Denver: Transplantation is a huge

trauma for everyone involved. If we can successfully treat symptoms

and keep me comfortable with a reasonably good quality of life, then

it makes sense to pursue that route, rather than building hopes on a

transplant that may not occur for several years, if ever.

Here is the plan: I started Rifampin today for the itching.

Cholesterol treatment begins with Lipitor right after next week's

colonoscopy. We'll fix the anemia and CMV problems, or at least work

to minimize them, and we'll let the urologist deal with the prostate

issues, if any.

A cholangiocarcinoma diagnosis could change all that, and we will get

more definitive answers after tomorrow's ERCP, but the tests so far

this week suggest that the suspicious areas in the scans are little

more than stray fat deposits.

On tap for tomorrow: endoscopic ultrasound and an ERCP.

Tom

PSC 1999

UC/Crohns 2004

Who knows what else 2007