Medical Mystery Tour 2007

So the Medical Mystery Tour continues on for the Lemmings' Household here in Hot-Lanta! I found out yesterday that I have been diagnosed with Primary Sclerosing Cholingitis (PSC). This is the same disease that I was told 5-7 years ago that it was probable I had, but not likely, when my liver enzymes first went out of whack.

Because of my elevated liver enzymes over the last 4 years or so, I have been unable to get any sort of real life insurance. Last Fall I began the up hill battle to get life insurance again because my enzymes were "normal" across the board. Yet again I was denied coverage because of the "probable" diagnosis from the liver specialists at the University of Alabama at Birmingham.

So, Jen and I decided that I needed to get an update for my medical records. Two weeks ago I went to a doctor here in Atlanta and had him put in about 25 different lab orders to get to the bottom of my weird liver history (in case you are wondering 25 lab orders equals to about 11 vials of blood being sucked out of my arm). Because I was already going to the lab to get blood drawn, I had them add a marker identifying test for Cystic Fibrosis (there may be a slight chance that because of the brain tumor, the infertility, and weird liver stuff that I could have a rare, asymptomatic form of CF - blood tests are not back as of 7/25).

My blood results and an MRCP (MRI of the liver, bile ducts, gallbladder, etc.) came back this week, so I met with my new liver doctor yesterday afternoon. The results were that my liver enzymes have again increased dramatically, with 73% of the elevated enzymes coming from the liver; I have the marker for PSC; and my MRCP (MRI) came back completely normal.

What does this all mean? It means that I have been officially diagnosed with PSC - which is a liver disease (really it is a problem in the bile ducts around the liver) that has no known cure, but thankfully is slow moving. I have attached a link if you want to get more information:

What is PSC? (on a side note - because they found this disease so early, I have "more time" than a typical person diagnosed with PSC due to liver destruction. I am 100% healthy when it comes to this disease, but have the pre-pre-pre stages of PSC.)

I won't be making in real changes to my lifestyle as it currently stands - I don't take Tylenol because its effect on the liver; I can't becoming a raging alcoholic (drat!); I really don't think that I can exercise anymore than I currently do - maybe some weights?; I try to avoid lots of fried foods (don't want to be a lard-ass AND it screws with my cholesterol - and I can't take any cholesterol medications because it screws with my liver enzymes); and I'll continue to take a good multivitamin because I am a nerd AND because PSC can eventually block the absorption of the fatty vitamins (A, D, E, K).

What will I be changing? I'll still be changing diapers for the near and present future; I have begun to take a prescription medication called Urso Forte (500 mg) twice a day with food; and I'll change lanes without using my blinker (just to make Jen mad!)

Prayer Requests:

(1) For Jen, Morgan, and future babies. The diagnosis is not immediately bad, but does not bode all to well once the disease is in full force (average life span after diagnosis and symptoms is about 10-20 years; liver transplant; etc.). (2) For my family and friends as they hear the latest medical news and help them to understand that it is not in medical hands that I find encouragement, but through the Spirit and how He moves those that I come into contact with.

Much love...