jathy1125

Christine- CC has taught me to never “bitch” about insurance premiums. I was lucky that we had private insurance. I qualified with in weeks for SSD. You have to wait 6 months from diagnose to apply. I was diagnosed July 2008, applied Dec,2008 rec’d yes answer Dec 2008 and got my first check Feb 2009. You don’t get medicare until you have been on SSD for 2 years. I just reached 2 years and am finding out my medicare, supplement and drug coverage will be more than private insurance!! This is the most eye openning expierence. Good luck and lots of prayers- Cathy

Mom- I had 2 transplants (both cadaviers) because a month after first one on 4th of July my hepatic artery burst, due to radiation damage. They at first thought they could do a graft but realized it was “like trying to sew wet toilet paper”! They had to cut off liver function and I was given maybe 36 hours to find a new one. My battle is so full of miracles and what ifs.
You are right about worrying, you can’t stop it, but you can keep remebering I am alive. My family and I always knew that I could be oppenned up to find out it had spread. I will always remember my husband, daughter and sisters faces when I woke up from surgery, I knew it was all good. Focus on that moment. Second transplant was a different story, they had decided to wait to tellme I had been transplanted again, my husband lasted 5minutes!!
Do you know who your live donor will be. I also had to undergo 2 “fake liver
calls”, both time I was prepped and just waiting for drip, when surgeons decided new liver was a no-go.
Keep thinking about your boys, I have a 22 year old daughter. My first question when diagnosed was will I see her graduate college and dr. said yes. May 8,2009 I watched her walk across the stage and receive diploma. I ended up back in hospital next day (I got CMV, something immune suppressed people have to watch out for), but I saw her!! My diagnosis and recovery has been a 2 year journey, but I am alive and functioning.
Good luck and keep praying, sending prayers your way. Feel free to e-mail Cathy

Hi- I am 2 time transplanted cc survivor. My care and transplant was with Dr. Chapman at Barnes-Jewish Hospital. One of the first things told (and so much was said), was the fear of seeding. Exploratory surgery to make sure cancer hadn’t spread was a concern. My other option was 6-8 months, so it wasn’t very hard to do the math. I will be immune suppressed the rest of my life and that is the key word “the rest of my life” and once again the math on that was pretty simple! My drug bill for anti-rejection medicine is $2000.00 to $5000.00 a month, but like my doctor said I am worth at least that!! Don’t make yourself crazy with all the what “ifs” focus on the big picture, LIFE!! I am cancer free and alive due to 2 transplants!!- Cathy

Wow that is an awful lot of information to get all at once. Try being thankful with all that,” but” thank god you are at Barnes. Does it kinda of amaze you that they want another opinion, you have to love a doctor who doesn’t have a God complex!!
We will keep you in our prayers for a Barnes free thanksgiving. ( I can personally tell you that the holidays wern’t so bad there, in 2009 I spent Valentines, Easter, MothersDay Memorial Day, 4thof July and Labor Day there. Our family joke was if the post office is closed Cathy’s going to Barnes).
Hang in there and thanks for the stock tip!! Lots of prayers-Cathy

Hello Julie, sorry you had to find this site. I am a cc survivor. I live in southern Illinois and am alive today because of Dr. William Chapman and Barnes-Jewish Hospital in St. Louis, MO. Barnes and Mayo-Clinic are both top hospitals for cholangio, it just depends which part of Indiana you are in. I was 53 when I was diagnosed and my only main sympton was being itchy. My tumor was inoperable and my only hope was a transplant. I had to do chemo, chemo pump-radiation and oral chemo before I could qualify for transplant. I ended up having 2 transplants. I was given the last rites twice. I am alive and celebrating my first healthy Thanksgiving in 2 years!! Thanks to God, he put me in the best care for cholangio. Feel free to e-mail me for more info or numbers if Barnes is closer for you. There is hope and lots of prayers going your way, I am proof of miracles. Cathy

Yea Rachael! I am s cc survivor due to not one but two liver transplants!! I received my first transplant May 24, 2009 and my second July 4, 2009!! I am also a mother to a 23 year old amazing daughter (a little older than yours, haha!!). I was given only 36 hours to live, unless a new liver could be found. I was in a coma and on life support for 3 weeks and ICU for a month. I was in the hospital for another 3 months. Thanks to the most amazing doctor, Dr. William Chapman I am alive. I always tell the story how he told me I would see Cates, graduate from Murray State University, KY and on May 8, 2010 I did. Dr., Chapman is an american hero!! I am so excited to celebrate my first healthy holiday season in 2 years!!
I am kinda of curious why chemo now, are you not cancer free? All my chemo and radiation was done prior to transplant as per protocol for trial.
Congrats and lets keep reminding everyone to be a donor, you will save someones life, we are living proof!!! God’s miracle-Cathy
(P.S. another interesting coindence was I received my official diagnosis Aug 5, 2080)

floridamom-If you are qualified for a live donor transplant is that a partial rescect. I could not qualify for transplant till I did chemo, chemo and radiation, and surgery to make sure it hadn’t metastaside. Good luck -Cathy