Update on resect v. transplant decision...oh, and we had the baby!!!

December 15, 2007

First, the PSC news. My gastro doc, the liver disease specialist,

and the liver transplant doc all met last week and reviewed my case.

The team agrees that the best course to take for now is the resection

of the bile duct with the suspected pre-malignant CCa cells. (The

other options was a transplant right away). They all felt it was

something they could do now and monitor for CCa with enough frequency

so it wouldn't get away from them. In their words, when it becomes

fairly easy to identify, it is increasingly more difficult to deal

with. So, I am scheduled for an MRI on Monday, along with a surgical

consult. With any luck, I can knock this out before the holidays and

use this year's health plan (since we've already paid out all the

deductibles and out-of-pocket maximums... isn't it terrible that THIS

is what I'm worried about...paying for it???!!! ugh.. that's another

story.

Now for some other news... My wife delivered our fourth child on

Thursday, 12/13/2007. Our only boy, Garanzuay, and

my wife are both still in the hospital recovering. Jen is

progressing well. Sam is in the NICU because he's breathing too

quickly, but that's not uncommon for a c-section baby.

Just wanted to keep everyone up-to-date. I was so inspired by the

other blogs I've seen, I've started one for the family.

www.MyGaranzuay.com/BlogZuay

Lots of pics. Also, on the advice of many of you, I opened up to my

family and friends about the PSC. After much reflection, it seemed

selfish of me to keep it from them. In fact, I was underestimating

them and their ability to handle it. If one of my friends was sick,

I would want to know as well. I posted the letter (e-mail) in my

blog. It took three days to write (some laughing, crying, lots of

editing) and when I sent it...it seemed a great weight was lifted off

my shoulders.

Thanks for all the love, support and advice you have offered me. I'm

truly thankful...

- Severin

*********************

Severin Garanzuay

UC/PSC 2007

Father of FOUR (whew!)

Loving Husband

December 15, 2007

Severin,If it were me, and I had 4 young kids, and if I had a choice, I would opt for the transplant now. Especially since it sounds like it's an option. The reason is that there have been several people in this group who were diagnosed with CCa and died in about 4 months. This is a particularly deadly cancer, and hard to diagnose early. In fact, it's just been very recently that was even the option of getting a transplant for the cancer.I know this can be a tough decision, especially if you're feeling well, and you have a brand new baby. But think about being around for that baby in 10 or 20 or 30 years. I had a colectomy before there was cancer, but there were precancerous cells. A UCLA doctor told me I had a 20% chance of already having colon cancer. Even so, it was a difficult decision, because I knew it would change my life, and I'd notice the change, every day, for the rest of my life. But I didn't get colon cancer. I know too many people who have died from colon cancer, including family members and friends. I can tell you dying from cancer is NOT a good death. And with you, it sounds as though the doctors are pretty sure you'll get CCa.By the way, you may also want to be seen by the Mayo Clinic - the top in the field for CCa. I think the doctor is Gores. It's worth a call at least, and I heard that he did return one of our members phone calls, and he was very helpful. Look up the Mayo Clinic on the internet, and cholangiocarcinoma and Dr. Gores. Hopefully you'll get the number. Unfortunately, I'm not sure which Mayo Clinic he's at, but I think it's Rochester. Here's a link to get you started:http://www.mayoclinic.org/bio/10017623.htmlGood luck!Marie

To: From: severin@...Date: Sun, 16 Dec 2007 04:52:38 +0000Subject: Update on resect v. transplant decision...oh, and we had the baby!!!