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Need HCM Specialist in Rochester, NY


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liona Find out more about liona
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  • Need HCM Specialist in Rochester, NY

    My brother has just been hospitalized in Rochester NY for tacacardia and abnormal rhythms, which has me in a panic. He had a normal echo in Feb. but he has never even seen a cardiologist before. In my life, many times the proper test was run, but inexperienced people couldn't read the test well enough to figure out the meaning of it.

    If he has HCM, I want it diagnosed before it gets any further. He is part of the local insurance system, which demands that local Drs. be utilized unless there is a strong need for an outside specialist.

    Anyone have any suggestions about help in Rochester, NY??

  • #2
    Re: Need HCM Specialist in Rochester, NY

    Liona, I don't know anyone there, but I will be thinking of your brother and praying he is all right.


    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.


    • #3
      Re: Need HCM Specialist in Rochester, NY

      Do not worry about the doctor at this point...get the echo and see what it shows. While specilists are prefered in my opinion an echo can start us on the road.
      Do not panic...

      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)


      • #4
        Re: Need HCM Specialist in Rochester, NY

        Our teenage son has HCM, and we live in Houston. However, our oldest son is at the Strong Medical School campus of the University of Rochester. We recently had him screened for HCM with an EKG, Echo, etc. by Cardiology at the Strong Medical School Hospital. He was impressed with the knowledge and caring of the staff he was sent to.

        Upon diagnosis at Texas Children's Hospital in Houston, we were sent to a specialist from the cardiologist that diagnosed the condition.

        If there is not a Cardiologist that specializes in HCM at the U of R, I would ask for a referral from your diagnosing physician.

        I also would not hesitate to travel to make an appointment with a top-notch facility. I think the best in your area are in the Cleveland area ( 45 minutes by plane) or Boston.

        Good Luck. God bless you. Our son was diagnosed only two years ago.

        Diane Tipton


        • #5
          Re: Need HCM Specialist in Rochester, NY

          My brother had bad Atrial Fib through the night till about 5 am, when the meds brought it back to normal range. Looks like he might leave the Hospital soon. He had bad Atrial Fib, heart beating as high as 200 for about 20 hours before it calmed down.

          I can hardly bear having both of us have heart problems--------- Plus an old sick, somewhat confused Mom to care for.

          I know that it will take time and more testing to figure out what is really going on with him.

          I can't even figure out whether I am really able to drive up there to help him or not--------- Still unsteady from my own ablation 5/29---------


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