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  • Frustrated

    Hi everyone, I am a 50year old man,diagnosedwith HCM at age 16. I have been on many types of drug therapy over the years. Most recently in 1996 I recieved a pacemaker, later, in December 0f 2001 it was upgraded to an ICD. I am still very symptomatic; shortness of breath, chest pain and left arm pain are some of my symptoms. My cardiologist suggested that the chest pain and left arm pain are not related to my HCM. He also tells me that I do not have a gradient, so I am not a candidate for any surgery. However I feel that I dont have a gradient because it is controled by drug therapy. I am slo still on the following medications, iososorbide (120mg once daily), cardizem CD (300mg once daily), cardizem XT (120mg once daily), diovan (160mg twice daily), coumadin (10-12.5mg daily), and prozac (40mg once daily). Recently I have been taking Louastatin (20mg daily) for my cholesterol. My family and I have been through a lot over the years and I would Like to control the chest pain, but all they tell me is that I need to learn to live with it. About a year ago I went to see Dr. Udelson in Boston and I am considering calling for an appointment for an echo with them and an evaluation to discuss my options. My doctors here want to start me in a heart Rehab Clinic. They are suggesting that I may be deconditioned. Although I have been retired for aobut a year and a half, I am most certainly more physically active now that I was when I was sitting at a desk for 8-12 hours a day for 10 years.
    My biggest concern at this time is to control my chest pain. The other symptoms I will more than likely always have to live with. I would greatly appreciate and comments or suggestions.

  • #2
    Boston now

    Dear Dennis,

    Please call Dr. Udelstein's office right NOW.

    It does not sound like you are getting the right treatment and it is highly unlikely that cardiac rehab or whatever is the right path for you.

    You don't have to live with chest pain ---you need to get to the cause and you are on a very weird mix of drugs. I have never seen anyone mix plain and extended release versions like that. And mixing what you are taking is very tricky business and it sounds more like they are throwing the kitchen sink at you than anything else.

    Hang in there and talk to Boston.

    Let us know...



    • #3
      You should really call Dr Udelson's office, they are very helpful. I live clear across the U.S. and when i called them they wanted me there ASAP. I also have pain similar to what you describe but they are helping me.
      And what do they mean by decondition??
      Get help NOW.
      Laura Johnson


      • #4

        "Decondition" is doctorese for out of shape.


        • #5
          CALL Dr. Udleson... get his input...
          Short sweet and to the point...
          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)


          Today's Birthdays