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daddylove, I was diagnosed with an ERCP. My main sympton was being itchy. My tan that summer was very golden, and they think it was probably due to being jaundice, but you couldn’t really tell. I was very lucky (one of my many miracles during this disease) was that the doctor (Dr. Aliperty) knew what he was looking at and knew all brushings would be negative. Brushings were done twice and pathology report came from Mayo, confirming cc. Good luck and lots of prayers Cathy
Codergirl, the only thing that ever helped my itching was a another ERCP. I had iv benadryl etc… but when itching started it usually meant a clogged stent. I would check with doctor. Cathy
Ziggydog- I have posted on here many times that I am a cc survivor because of a transplant (I really had 2). My miracle was at Barnes-Jewish St. Louis, MO. rated nine in the nation. My doctor was Dr. William Chapman who is in the top 5 doctors in the nation. I was diagnosed at age 53 with no symptons except itchy on July 31, 2008. I was in Dr. Chapmans care within 24 hours and my miracles never quit happening. There is a criteria to be met to qualify for transplant, but until you are told by the most expierenced centers (Barnes or Mayo) no, don’t give up. If you would like more of my story and expierence feel free to call (618-567-3247). My story is so full of hope and care. Keeping the prayers your way, Cathy
kathy- thanks for the post. I have posted on here many times, that I am alive only, because of a transplant (really two)! I am a cc survivor because of Barnes-Jewish Hospital and Dr. William Chapman. He is an american hero.
Go green, recycle your organs!! Cathy
Hi Ziggy, Welcome, sorry you had to find this site though. I am a cc survivor. I am alive today because of a liver transplant (actually two). I know that transplant is not an option for most, but it is an option and a cure. What bothers me about your post is you said your doctor didn’t think it was an option, he should know wether it is or isn’t. I was very lucky because I was diagnosed at one of the best cc cancer centers, Barnes-Jewish in St. Louis MO. I did not need to get a second opinion, but in your guys case it cannot hurt. Two of the best cc cancer centers are Barnes or Mayo-Clinic. Don’t just accept your doctors word till you honestly believe he is God!! Good luck and lots of prayers- Cathy
I am excited to say that I am celebrating my 56th birthday today!!! My first healthy birthday in 2 years!!! I spent the last 2 at Barnes, and today I am going to Macy’s, a much better choice (plus its coupon day, tell me theres not a God). I just want all of us to know there is hope, miracles do happen!!! Lots and lots of prayers!!-Cathy
Stacey- I agree, they become friend and family. It was hard to get use to waking up and Dr. Earl not being in my room every morning. Last time I went to 11th floor at CAM building they just heard my voice and all came out of rooms to see me and kept taking me to rooms to meet more doctors!! I am so glad that your dad is so loved and taken care of, we really need that care with this disease. Lots of prayers- Cathy
Cristie. I am a cc survivor because of liver transplant!!! I could only be a candidate if cancer was contained. I did gemcidabin, then 24 hour chemo pump with 5FU while doing radiation and Xeloda (oral chemo), while waiting for transplant. My cancer never changed, but it didn’t grow. I have the worlds greatest doctor, Dr. William Chapman at Barnes-Jewish in St. Louis, MO. My story is nothing short of a miracle because of this team olf doctors and hospital (I had 2 transplants). I have posted on this site many times about my expierence, so please call me if you would like more info or help. (618-576-3247). I can not say enough about my journey through this awful disease, I am one of the few sucess stories. Lots of prayers-Cathy
Stacey- It is amazing that all the people that go through Barnes that someone like the valet remembers you!! My 2 years at Barnes is like that. Every tech remembers you and your story, and our stories aren’t out of the ordinary there, they just honestly care! My oncologist sends me a handwritten christmas card using her first name only. God didn’t abandon us when he sent us this disease, he at least gave us great care. Good luck and lots of prayers for you and your dad, email if you ever want company while you are there. Cathy (P.S. Dr. Logan and team always called Dr. Earl “ken doll”)
Jenny, be careful with ambian. I took it one time and had hallucinations, it took 48hrs to get out of my system, it was awful. I never believed any of those stories about this drug but they are true. Igot more sleep and relief with dilated. Good luck-Cathy
Stacey, so interesting reading your post. I was diagnosed by Dr. Aliperty on July31,2008 at 3:30 in the afternoon, life stopped. Dr. Aliperty told me right away I needed to be transferred downtown (I was at West County) in Dr. Chapman care right away. My first meeting with him was Sunday morning (nurses said he never comes in on Sunday unless its his call). We started transplant protocol right away. It took 6 months to be listed on transplant list and another 3 to get call. It only took 24 hours to get second liver.
My road was always headed in the right direction and always full of hope. Dr. Crippin is my liver doctor, it has been 2 months without seeing any of them, so strange. I also had Dr. Anderson, Dr. Doyle Dr. Lowel (told me I had one foot on a bananna peel and the other in the grave!!), and Dr. Earl, my coordinator was Pam Thurston. They are true miracle workers!! We joke that I have bought at least a door for the new transplant floor. Always want people to know how lucky I was. Cathy
Adrianna, KathyB is right about Mayo. Barnes-Jewish in St. Louis MO is same program and listed #9 in nation, so it depends what part of Iowa you are from. Dr. William Chapman at Barnes-Jewish is my doctor and hero. He is listed in top 100 doctor, google him. Taking notes is so important none of it will make any sense later and every set of ears will hear something different. I knew Dr. Chapman was great when he wanted us to take notes and would always stop and spell things and encourage us to google, never talked down to us. He treated me and my family!! E-mail if you need phone numbers. Keep praying, my daughter was also a junior in college when diagnosed, Dr. Chapman promised I would see her graduate and I did on May 8,2010!! Cathy
Since I was the patient and not the caretaker I have a different view point. My doctors automically put me on low dose of lexipro. Apparently I was not a pleasant person, my daughter who has the patience of job threatenned to put me in nursing home, which I was ok with!! I remeber hating bathes, physical therapy, occupational therapy and anythging that involed being among the living!! I now love my showers and being alive again, but only because I put my caretakers (sisters, daughter, and husband) through hell and they didn’t put up with it. I am living proof that things do get better. Hang in there and don’t worry about being bitchy, we do come to appreciate it. Cathy
Adrianna, I am a cc survivor from the midwest. I am one of the (if not only) few people on this site who was saved by a liver transplant. My family lives in Omaha NE.,(I live in St. Louis MO. area) and we are big fans of University of Nebraska Medical Center. My mom was giving only months when she was diagnosed with cancer(a different kind) and found the worlds leading specialist there, she lived many many years after that. I am sure they will have a great specialist there for your mom there. I believe they were starting the same clinical trial I had at Barnes- Jewish in St. Louis MO. Make sure you ask about transplant option. I too was very healthy and just itchy when diagnosed with cc in July 2008. Feel free to email me for more information or some one on one hope. Keep praying and so will we Love, Cathy
Ladybug and Highsmith- I cannot write enough how lucky and blessed you are to be at Barnes. i have been all over that hospital for 2 years. I was on the 6 floor last time for 3 months. I had 6 drains, a feeding tube and a massive open wound which a vacuum pump wouldn’t work with. My wound was changed every 12 hours. I am sure if you mention my name (Cathy Dunnagan or Mrs. D) to Kim (physician asstitant) or Tracy, Kelley or any of the nurses they will know me. I went back for a visit last month and shared so many tears and hugs. I spent a month on 8th floor ICU, receptionist in waiting room remebers my family. Tanisha was my ICU nurse for both transplants, she is one of the main reasons I am still here. She later told me how nobody would make eye contact or look at the clock, because they all knew they should call it!! I even have a picture up on there board. I woke up from a 3 week coma with a manicure and a pedicure!! Tanisha and gang were unbeliavable.
I just want you to know what unbeleivable care you are in. I could go on and on with all my stays at Barnes (probably 15-20, was just there for most of May and June) and couldn’t give one negative comment. I would love to help you both, so if you need company, a break, a shoulder to cry on or just food call (618-254-1642), we are 20 minutes away. My doctors and I both believe God saved me to tell my story and give this cancer a face and hope. Tell Dr. Crippin hi!! Lots of prayers for both. Cathy