Forum Replies Created
Marion and Cathy-
Since my reoccurrence in Oct and the subsequent Whipple, I’ve had some complications. I have no hepatic artery; the only blood flow to my liver is collateral from my Roux-en-y. I’m relisted for tx with a Meld of 8. The left lobe of my liver is necrotic but the right lobe seems to be working properly. Labs are decent and mostly within normal range.
Day to day life post tx was basically normal but some things have changed post Whipple. I don’t know if it is the necrotic liver, after effects of surgery, getting older, etc. but I tire more easily and it takes me longer to recover. Eating is different and I’m much more sensitive to food than I used to be.
That being said, I’m alive and fairly well. I have a 4 yr old who most days I can keep up. I even “coached” her spring soccer team.
As far as meds, I’m on prograf, prednisone, protonix, Coumadin, ursodiol, mag + protein, mag oxide, fish oil, and a multivitamin.
Cathy- what meds are you on? Did they remove the spot on your lung? How big was it? Mine was only 3mm. What is your protocol now?
Cathy, I bumped and updated my original post in the transplant section.
Bumped for Cathy.
Update: In Oct 2012, I experienced some RUQ pain. My tx coordinator ordered a CT scan and a spot was discovered in my native bile duct. Two ERCPs later, it was determined that my CCA was back. I ended up having a Whipple on Oct 24, 2012 in Louisville. i had some complications and ended up back in CA at UCLA. I ended up staying in CA for another 3 months and returned home in January.
Primary sclerosing cholangitis
Depending on the source, 10%- 30% of people with PSC will develop CCA but not all CCA patients have PSC.
PSC wasn’t found until after my CCA diagnosis. In fact, I had never heard of PSC until I woke up from my liver tx (approximately 2 months after my CCA diagnosis).
Thank you both for your responses. My surgery is scheduled for Monday. I guess we shall see…
Susie~ was your mass removed laparoscopically? How long were you in the hospital? Recovery time?
Marion~ I understand mets to ovaries are rare. Do you know if this member had mets elsewhere or was it contained to her ovaries? My liver surgeon asked me this question this afternoon.
Best of luck to you! Praying for you, your family and your surgeons!
My transplant took place at UCLA. Dr. Busuttil is an amazing man and one of my heroes. I can not say enough about him and his team. If anyone has any questions, please feel free to contact me.
Thank you everyone for your kind words!!! Sorry it has taken me so long to answer questions and reply back. Christmas Day was my 4 month anniversary of my transplant and what a wonderful day it was!
Regarding questions about my chemotherapy, it was orginally scheduled to start mid-November. I met with an oncologist back home in KY who refused to treat me; he felted like my WBC was too low to survive the chemo. I met with another oncologist who was very honest about my potential risks. Kidney failure and serious infection being the two main ones. After much thought and talk, we decided to decline chemo. My oncologist agreed. My husband started having doubts two days later and after pestering everyone at UCLA, he finally got through to Dr. Busettil. After looking at the pathology of my orginal tumor and consulting with a colleague, Dr. B agreed that chemo for me had more potential risks than proven benefits.
Jathy1125- We have more in common than you realize. I graduated from Murray State in 2005!!!