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hugooc Diagnosed with HCM October 2006. Find out more about hugooc
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  • Kaiser San Francisco

    I was just referred to a new HCM specialist at Kaiser San Francisco and would like to know if anyone here has heard of Dr. Ann Sheridan.

    Also, what questions or information should I bring to a first visit to a new HCM specialist?

    Thank you all.
    Hugo
    --
    HCM patient on a quest for access to the data collected by my implantable electronic cardiac defibrillator. Diagnosed with HCM with obstruction in October 2006, at age 40. Estimated LVOT gradient of 10-23 mmHg at rest, 147 mmHg with exercise. Passionate about connected health. Join me on my quest.

    On TEDx: http://bit.ly/ICDdata
    On Twitter: http://twitter.com/hugooc
    --

  • #2
    Re: Kaiser San Francisco

    How many HCM patients have you?
    How many post Myectomy/ASA patients?
    I ask not to qualify, but to know your experience with the variations of HCM.
    Do you work with (Insert EP name)

    How am I doing?
    Are there things I should be doing? And not doing?
    Medication –
    Are their any new medications available? Any new promising research?

    Hugo, I don't recall if you were ever obstructed, I know you have an ICD. But based on response you get, you might want to inquire as to his "surgical philosophy" and if that road is taken how does kaiser handle it? Are you referred to Stanford or another COE?

    I am sure some recent Newbies can chime in on what they asked their HCM doctors.
    Best of luck!
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

    Comment


    • #3
      Re: Kaiser San Francisco

      Hugo - I have never heard of her and I just looked her up. She is relatively young, and did not do any of her training at a place that has a HCM program nor does she seem to have published on the topic (again, a quick google search). I would ask her how much experience she actually has with HCM.

      Just because she isn't a HCM expert doesn't mean that she can't be a good doctor for HCM if she is willing to learn. I would try to engage her in becoming a partner and learning about HCM together (assuming she doesn't have much knowledge). I know some folks down here who have been happy with Kaiser, though they are mostly Long QT types. I have been less impressed with the HCM treatment I have seen down here, but that doesn't mean that she might not be ok.
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

      Comment


      • #4
        Re: Kaiser San Francisco

        Thank you Marc/Cynthia for the great suggestions and advice.

        Marc, I do have obstruction and BP drop with exercise—and a small gradient at rest. As you know, I also have an ICD. The device has met appropriate Rx criteria three times during the past 7 years (all successful runs of ATP, never a shock). I am confident in its ability to terminate VT.

        Cynthia, I noticed the lack of experience as well. I am not up to speed on the latest HCM research, so I hope I can rely on the expertise of expert-patients such as yourselves to help me navigate these uncharted waters.

        Also, the doc emailed me in preparation for our meeting. She seems inclined to order genetic testing. However, being an only child with no children of my own I don't see the benefit of cardiogenetics. Am I wrong?

        Thank you.
        --
        HCM patient on a quest for access to the data collected by my implantable electronic cardiac defibrillator. Diagnosed with HCM with obstruction in October 2006, at age 40. Estimated LVOT gradient of 10-23 mmHg at rest, 147 mmHg with exercise. Passionate about connected health. Join me on my quest.

        On TEDx: http://bit.ly/ICDdata
        On Twitter: http://twitter.com/hugooc
        --

        Comment


        • #5
          Re: Kaiser San Francisco

          No, you are not wrong. There are no treatment differences based on genetic mutation, and without any first degree relatives at risk, there is no point.
          Daughter of Father with HCM
          Diagnosed with HCM 1999.
          Full term pregnancy - Son born 11/01
          ICD implanted 2/03; generator replaced 2/2005 and 2/2012
          Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

          Comment


          • #6
            Re: Kaiser San Francisco

            Cyn, I agree in principle, but wouldn't it be worth it to have a genetic panel should the future present this type of care?
            I know more and more is being discovered about how genetic can affect appropriate treatment for various issues. It just seems like, as my (bubbie) grandma used to say: "It couldn't hurt".

            Also - Your viewpoint on the doctor is spot on. Most of us are semi-literate in HCM and with our abilities to research and ask questions, and the Doctor being open to coordinate with a COE, we can be pretty well taken care of.
            Marc
            Diagnosed @ 48
            Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
            Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
            AICD - Valentines Day '08, Spark Plug replaced 11/14
            After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
            Quietly going insane . . .

            Comment


            • #7
              Re: Kaiser San Francisco

              Well, I guess Hugo has to figure out how much it is going to cost him and whether it is worth it to him. He can always rethink in the future and have testing then. After all, they are identifying more genes all the time and if he did a genetic panel in a few years, it will likely test for more mutations than the panel they give today.

              Another thought I did have is whether Hugo has any cousins or other more distant relatives who may have the gene or the disease. I know that in my family we did pick up a couple of cousins who would otherwise have had no idea about HCM.
              Daughter of Father with HCM
              Diagnosed with HCM 1999.
              Full term pregnancy - Son born 11/01
              ICD implanted 2/03; generator replaced 2/2005 and 2/2012
              Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

              Comment


              • #8
                Re: Kaiser San Francisco

                Thanks guys, this is helpful. Cost was an issue years ago when I first heard of genetic testing. But it may be more affordable today.

                I have the latest HCMA Tool Kit (and CD) which I got from Lisa in May. I was thinking of bringing it along as a gift to the new doctor.

                Think it could be seen as presumptuous?
                --
                HCM patient on a quest for access to the data collected by my implantable electronic cardiac defibrillator. Diagnosed with HCM with obstruction in October 2006, at age 40. Estimated LVOT gradient of 10-23 mmHg at rest, 147 mmHg with exercise. Passionate about connected health. Join me on my quest.

                On TEDx: http://bit.ly/ICDdata
                On Twitter: http://twitter.com/hugooc
                --

                Comment


                • #9
                  Re: Kaiser San Francisco

                  That may be construed as threatening from the get-go. You should go and meet her and have a nice introductory chat. If she admits to you that she doesn't know that much about HCM, you can tell her that you are a member, and recently sat at our booth at HRS, and that you have some information that you would love to share with her if she is open. If she seems defensive and not open, then she might not be as receptive. I would not go in assuming that she is not knowledgable. I would jus† be your friendly and affable self, and try to engage her in a friendly dialogue. Charm is more than half the battle.
                  Daughter of Father with HCM
                  Diagnosed with HCM 1999.
                  Full term pregnancy - Son born 11/01
                  ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                  Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                  Comment

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