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Confused about what daughter should do

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Cyn B Find out more about Cyn B
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  • Confused about what daughter should do

    My daughter was diagnosed with HCM 4 years ago when she went for a physical to play soccer for her university. She went to our family doctor and the Dr. heard a murmur she had not heard before. This started our visits with the cardiologist. My daughter had asymmetric thickening to 1.4cm at the very basal antero-septum. She was showing no symptoms physically. They had her wear a Holt monitor. Everything was fine. Told us of 2 places to go if we wanted a second opinion. We went to this doctor and he confirmed; said she should go on a low dose of beta blocker 25mg/once a day after a stress test. The test was good; he was really happy with it; said a low dose would only be needed and that she would most likely never need a device. She was 19 years old. We decided to stay with this doctor and not our local; we like him a lot. The next year her stress test was not as good; he increased the beta blocker to 50mg/once a day then to 75mg. Last year he told us that her HCM improved and that he never had anyone improve before. The stress test was still not good; her heart rate was going to high at the end of her run. He increased the beta blocker to 100mg/once a day. This year she got light headed right before the stress test and her blood pressure dropped during the test and she heart rate still increased too high. He talked about increasing the beta blocker to 100mg in the morning and 50mg at night or putting in a device. I asked him about the fact that low blood pressure runs in our family. I myself get light headed and dizzy because of it and I do not have HCM (we have all be genetically tested) and could it just be that? He said that it was a bad combination. I then asked why her symptoms were getting worse when her HCM was better could it be the beta blocker? He said that he did get the same measurement this year as last so we will get an MRI to confirm that the thickness is less. I now got a call from his office that the MRI is the criteria for a device. I have go get that straightened out.
    My questions are: 1) should she be taken off the beta blocker? 2) Should we see a new doctor and if so who should we go to? 3) We live fairly close to Dr. Martinez at Lehigh Valley Hospital & my daughter’s campus is right down the road from Morristown Hospital (they just opened a new HCM department). Does anyone know either of these doctors? We would have to find a new doctor next year any way since the one we are seeing is pediatric.

  • #2
    Re: Confused about what daughter should do

    Cynthia, my suggestion is that she be evaluated at a HCM Center of Excellence(COE). There is a list of them on the HCMA home page so you can find one that is close to you. HCM COEs specialize in HCM and see a much higher volume of HCM patients than cardiologists in the field. I sought out care from the COE at Johns Hopkins and have gotten fantastic care. Others on this forum will report similar results from other COEs.


    Sent from my iPad using Tapatalk
    Joel

    Born 1955 in USA, DX'd w/HCM 1996, in United Kingdom
    2011, 2013, 2014 ablations for Afib and flutter in UK, INOVA Fairfax, VA, and Johns Hopkins
    June 2014 DX HOCM at Johns Hopkins
    October 2014 Myectomy and Cryomaze at Mayo Clinic

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    • #3
      Re: Confused about what daughter should do

      I just checked and Lehigh Valley and Dr Martinez are on the HCMA list of COEs.


      Sent from my iPad using Tapatalk
      Joel

      Born 1955 in USA, DX'd w/HCM 1996, in United Kingdom
      2011, 2013, 2014 ablations for Afib and flutter in UK, INOVA Fairfax, VA, and Johns Hopkins
      June 2014 DX HOCM at Johns Hopkins
      October 2014 Myectomy and Cryomaze at Mayo Clinic

      Comment


      • #4
        Re: Confused about what daughter should do

        Yes, a visit to a center of excellence is a great idea.

        Gordon
        Myectomy on Feb. 5, 2007.

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        • #5
          Re: Confused about what daughter should do

          Thank you!

          Comment


          • #6
            Re: Confused about what daughter should do

            Dr Marty Maron, nationally renowned in HCM management is seeing people at the new Morristown HCM clinic. He himself is only there once or twice a month and in Boston the rest of the time, but he has trained them and backs the clinic docs 100%. I believe Lisa, the head of HCMA goes to that clinic...you might want to call her at a The HCMA office for some insight into the closest COEs.
            After years of symptoms:
            Officially Diagnosed HOCM 2006
            Myectomy 3/11/13 at non-COE
            Extended Myectomy 7/23/14
            At Mayo with Dr. Joseph Dearani

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            • #7
              Re: Confused about what daughter should do

              I have been seeing Dr Maron at the Tufts location for over 5 years. He is a fantastic physician. I live in Bergen County and was thrilled to hear that Dr Maron would be at Morristown on a regular basis. I saw him at the new COE last month. Morristown in general has a great reputation, top notch cardiac program and trauma center. Now add to that program a HCM center and you have a perfect match. Knowledge and compassion and its all in one place. On top of that the new Cardiac buildings are gorgeous.
              Michael
              Dx with HCM November 2009
              Myectomy and Mitral Valve Repair @Tuft's March 2010

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