Polycythemia Vera treatment in NW Fla seems to be not-so-good

Posted by Gina Rosenthal in community building | 5 Comments

My dad has Polycythemia Vera (PV). It’s a form of cancer basically. It is an abnormal increase in red blood cells due to excess production of the cells by the bone marrow. It usually strikes people in their 70s (my dad is 65), and is supposedly a “rare, chronic disease“. But my dad and two of his brothers have had it (maybe the other brother had it too, but he was captured in Vietnam and he got left there when the US pulled out).

So, my dad goes to doctors down in Pensacola FL who are complaining that the insurance my dad isn’t paying them enough. UGH!! I want to go smack someone.

I think they need to come up here to Dana Farber.  My mom needs to learn how to talk to those doctors so they take her seriously. Y’all just don’t know how important class is to get services in that part of the country. I wish I could go for just one visit.

I just wish they would come up here for a little while. Before it gets cold and they wouldn’t want to come.

5 Responses to Polycythemia Vera treatment in NW Fla seems to be not-so-good

  1. Teri says:

    The Pensacola Florida area needs more MPN Specialists…Polycythemia Vera, ET, Myelofibrosis.
    And, knowledgeable ER Staffs who know what this is.
    Anyone out there who can recommend where to go?

  2. Jared says:

    Are there any specialists reading this in Pensacola? This is not a “rare” disease as reported and you’ll find more people with MPN’s exist than are being reported.

  3. Here is a list of MPN Specialists around the U.S. The list is a work in progress and will be growing – https://www.pvreporter.com/mpn-specialists-cancer-treatment-centers/

    PV Reporter – Publisher

  4. Teri says:

    No one in Florida.

  5. Jared says:

    Thank you.

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