1 (edited by sdaigre Fri, 09 Sep 2011 13:03:39)

Topic: Met with CC / LT survivor

My husband and I feel so much better after talking to two people that went also went through Methodist for transplant. Bonnie, thank you for sharing your story.
You and your husband are in my prayers. We met with another gentleman who Went through the process there and is cancer free after his transplant 16 months ago. He is doing very,very well and could answer so many questions.  After talking to them and reading so many posts and seeing frustration felt by others, it reinforces that I am my husbands advocate and it's up to me to stay on top of everything, even if they are the "specialists"! It is rumored that there are some other CC folks that are being considered for transplant at Methodist in Houston and I would welcome hearing from them.

Re: Met with CC / LT survivor

Sdaigre-Glad you found a "mentor" !! Transplant is a major HOPE for us.
I am sharing my story this weekend at health fair for Mid-America Transplant Center, it is very important for me to get the word out about transplants, it is the one way I can thank and honor my donors.
Keep posting your journey and help this "cure" a first choice and not a controversial trial. Please feel free to contact me if I can help.
Lots of prayers-Cathy

Re: Met with CC / LT survivor

Sdaigre, it really helps to find people you can talk with and I am so glad your mind is settled now and yes we are the best advocates in the world. Please keep us posted on when your husband's surgery will be.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Met with CC / LT survivor

I have a question...we were told that my husband was not eligible for a translplant for the same reason that he isn't a candidate for a liver resection.. is this true, or is this just the opinion of our doctor?

Re: Met with CC / LT survivor

Julieanne- It is very important that your doctor believes in transplant, most doctors are not on board with it. Wayne Parson was told " it was illegal, because it was a waste of good a liver, to give it to someone with cancer". This was said at a major cancer center. I am alive because of two. I was diagnosed with inoperable CC. My tumor involved my portal veins and was in the "fingers" of my bile duct. My one saving grace was it hadn't metasized. I did not qualify for a resection, everything had to go.
My doctor was William Chapman M.D. at Barnes-Jewish Hospita in St. Louis MO. The Mayo Clinic also has the same protocol. Please have it ruled out by a doctor who believes this is and thinks it should be an option. Wayne Parson has posted that his wife would still be alive if she had been referred to Dr. Chapman (he found him on his own), she qualified.
Lots of prayers-Cathy