Thursday, March 20, 2014

De-Liver Me ~ March 20, 2014

It's occurred to me I'm seriously overdue with an update on the Liver Times. To set the stage, there is a scene in the movie "Dave" with a docent leading a tour through the White House. She's walking backwards, motioning with her hands like she's directing a plane on the tarmac, and repeating the phrase "we're walking, we're walking". The segue mantra here is "we're waiting, we're waiting" but I know a lot more now than I did six months ago.

Bridging TherapyThe four TACE (transarterial chemoembolization) treatments done last summer have accomplished their goal. December and February CT scans show that my tumors, Audrey II and Carmine, are stable and not growing. 

Something new on the Horizon ~ The long term effects of Hepatitis C and hemachromatosis are the likely cause of the hepatocellular carcinomas. I have an appointment in late May with the Viral Hepatitis Clinic at UCSF to get information on a 1-2 month regimen of the new drug combo of Ribivarin and Sofosbuvir. It's been effective in making the Hep-C viral load undetectable in the blood. The longer it is suppressed the less likely it is to return after transplant. Treatments will start this summer.

The Waiting Game ~ The transplant list is a numbers game, played by the book, and driven by something called a MELD score: an acronym for Model for End-stage Liver Disease (most transplant patients would really like to see a name change). A combination of three blood tests are done quarterly and then points are added to your existing MELD score. 

Siamese Cat Patiently Waiting for Dinner - Art Print or ACEO by Bihrle ck196
Patiently Waiting
My actual MELD is a 6, but with the diagnosis of cancer it was automatically kick started to a 22 in April 2013. Quoth my transplant nurse: "Your liver is functioning fine, you just have a couple of F#%*?$G tumors." My current score is a 29. I'll earn 2 more points in May, 2 in August and 1 in October which will bring me to 34. You normally reach the top of the transplant list when your numbers reach the mid 30's, but the number may vary, up or down, depending on availability of organs. 

The Irony of It All
Iron overload girl is now anemic with a ferritin level of 14. No one has been able to figure out why. My gastroenterologist had suggested taking ferrous gluconate, but the ingredients read like car wax and cleaning products so I declined that dance partner. My UCSF doc suggested only a low dose supplement so I'm taking all natural Floradix. The drug regimen mentioned above to deal with the Hep C will also lower ferritin levels so it's important for me to stay on top of this.

Valkyrie 8.5 x 11 fine art print. Warrior Angel and Eagle mount.
Warrior Angel and Eagle Mount
Challenges ~ We all face challenges of one kind or another. The key is to embrace them with grace, humor and a warrior attitude. Choose to be fearless, be your own advocate, and question authority. Don't waste any hour of a day and keep your creative side engaged at all times. 

"Challenges make you discover 
things about yourself 
that you never really knew". 
Cecily Tyson