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  • in reply to: Hi #14537
    mr-goodbar
    Participant

    Sara – great tips, thanks!

    The shuttle service (Rochester Direct) especially sounds like a great idea.

    My father has been having symptoms (esp. abdominal pain, weakness) but I assumed it was from the PSC, but I’m not really sure. I suppose we’ll have a better idea if he’s a candidate for the transplant after the evaluation. I have looked at the Marriott and Kahler, and yeah, they were pricey. We’ll probably go with the Holiday Inn Express or one of the lower cost options, since we would be staying about a week.

    Thanks again!

    in reply to: Hi #14535
    mr-goodbar
    Participant

    Lainy, Banner Good Samaritan is in Phoenix, isn’t it? We’ll be in Rochester, MN..though during the recent heat wave it might’ve felt like Phoenix.

    in reply to: Hi #14533
    mr-goodbar
    Participant

    Thanks for your support and tips, Sara. We’re going to be seeing Dr. Gregory Gores, one of the doctors behind this treatment. (I would also certainly consider any good leads from your brother-in-law.)

    We were referred to Dr. Gores by a surgeon at Mount Sinai hospital in Manhattan and were told that a transplant under the Mayo protocol is essentially my father’s only hope for a cure. (This is the same doctor Val McCrea saw, according to the blog.)

    When I spoke with the Mayo referral coordinater who scheduled our appointment, she did not mention any free lodging options; the ones you mention and the ones listed on the Mayo web site that do provide free/low cost rooms seem to be tailored to people receiving daily radiation/chemo or those waiting for transplants. We don’t exactly fit into these categories right now, since this is just an evaluation/consultation. So it looks like I’ll have to book a room in a local hotel.

    Thanks again!

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