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  • in reply to: The rollercoaster ride of CC #51227
    mystar
    Participant

    Dear Ash,
    I will pass on my experience in the high amonia level experience. My husband had only two (2) really bad experiences with the high level and both were terrifying. He too was prescribed lactulose which does work somewhat, but the side effects are not so good. He was then prescribed Xifaxan. This medication helps take care of the bacteria that causes the high amonia levels and he has not had another episode in 5 months. If you talk to your Mom’s doctor and he agrees that this might help, be sure to ask for SAMPLES. This medication is approximately $1400. for 1 month (60 pills). It is covered by most Medicare Part D providers if the treating physician will complete their form that simply states the alternative medications (lactulose) is not getting the job done. As for the smoking, I have tried to get my sister and brother to quit – they are still at it, my brother has had to have stints for hear problems and still continues and I too am upset with them. After seeing up close what I have had to go through with my husband’s cancer they still have the audacity to light up immediately after walking out my front door!

    Hope this info might help you –
    Take Care
    BJS

    mystar
    Participant

    Kamilla, — I am confused – my husband has been treated @ MDA since 2003, first for polycythemia and now for cholangiocarcinoma. Originally he had Blue Cross Blue Shield but as of Jan 1, of this year he has medicare as primary. No one has mentioned having a problem with his insurance – but then he has only had one visit there this year. They turned his care over to the Houston Methodist Liver Transplant team but continue to follow his case. Have you to talked to anyone other than your initial contact, you would be surprised how many different answers you can get while continuing to ask the same question. I do know that if your Dad’s financial situation fits their guidelines (basically little or no income), they have assistance available. I would also try the American Cancer Society, they have very knowlegeable people who can help, even with insurance problems. Their phone # is 1-800-227-2345
    Wish you the best-
    BJS

    in reply to: Treating Cholangiocarcinoma-Mayo Clinic #43207
    mystar
    Participant

    Las time I posted I thought the miracle we were waiting for had arrived. We were told to come to Houston with a MELD of 37. We have been here over 2 months now. The hepatologist was so good at treating the liver problems that my husbands MELD score is again going downward. Does anyone know what the rules are for MELD scores for patients with liver cancer. I was told that the starting point is set at 22 and then increased every 3 mos. ????

    in reply to: Treating Cholangiocarcinoma-Mayo Clinic #43222
    mystar
    Participant

    When I first posted on this sight I was at my wits end. I was able to schedule my husband for an evaluation on Monday, Feb. 7th. at the Baylor University in Dallas. I thought a second listing would better his odds. Instead he was admitted to local hospital and by Wednesday the 9th, his MELD was up to 36. At that point Baylor doctors thought that with his unique challenges he would not likely be put on their list. Just when I was wondering what now, Methodist called and transferred him to Houston where he is now near the top of their list. Once he is stable, he will be discharged and we will stay in Houston. Talk about the craziness????

    in reply to: Treating Cholangiocarcinoma-Mayo Clinic #43220
    mystar
    Participant

    Thank you Cathy and Marion for the Welcome, Yes, Marion the old coordinator was kind enough to confirm that the Meld score was 23 and update the “list” and cc the new coordinator. The thing that she couldn’t do was tell me that the CT Scans that were done on 12/08/10, would finally get reviewed at their weekly radiology session, but that I should go ahead with scheduling an appointment with the doctor for Jan. 31st. anyway since he only has clinic on Mondays and he would not be in at least 2 of the following 3 Mondays. Tell me this craziness is not normal. Today I requested that the local oncologist refer him to Baylor for a conference and to consider moving his listing if they would even accept him.

    in reply to: Treating Cholangiocarcinoma-Mayo Clinic #43217
    mystar
    Participant

    My husband was diagnosed 04/23/08 and will complete 1 year on the transplant list at The Methodist Hospital in Houston next month. I am increasingly concerned that perhaps another center might be better suited given his current circumstances. His meld score fluctuates dramatically – last month he was at 21, last week he was at 16, and today he is at 23. He is also on coordinator #5, which I found out by accident and still have had no contact with because she is currently out.

Viewing 6 posts - 1 through 6 (of 6 total)