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Long time no post - new issues

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Jerry Salzman Find out more about Jerry Salzman
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  • Long time no post - new issues

    Hi All,

    I know it has been forever since I posted. Once things go well and your life moves on, we tend to do that. It's been 3 years now since my defibulator and 1 1/2 since the myectomy. Overall I had been doing much better just tired alot (would come and go).

    Lately it seems worse. My weight has been going back-up which may have alot to do with it. I was exercising but around 4 months ago was so tired I stopped. (I was 367 lbs had weight loss surgery 3 years ago went down to 195 and now hovering around 225).

    Today seemed worse. Heavy breathing slower movement. I called and I'm seeing an on-call cardiologist later this afternoon. My question is has anyone started getting symptoms back after a myectomy?

    Jerry

    By the way, I do have an appointment in Cleveland next month. I am seeing Dr. Lever as Dr. Asher has moved to the Cleveland Clinic office in Florida.

  • #2
    Re: Long time no post - new issues

    Jerry,
    HCM has many symptoms some that are relieved with myectomy - and some that are just part of the bigger HCM picture. It sounds like you are having typical HCM issues - a medication change may be in order, as you are seeing Dr. Lever in a month that would be a good time to work on this issues.

    It is good to hear from you, I just wish you were feeling better

    Best wishes,
    Lisa
    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)

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    • #3
      Re: Long time no post - new issues

      Jerry-

      Sorry you are experiencing a "return" of HCM symptoms-I too have a similar problem. My Myectomy was 7 Months ago @Mayo & I felt Great (after 3 months recoperation), then the Pain & SOB is back! My local Cardiologist is stumped! I'm going to Mayo 1st week in March.
      Think Positive Thoughts
      Be Well

      RONNIE
      RONNIE

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      • #4
        Re: Long time no post - new issues

        All,

        Just back from the local cardiologist office. They did an echo and blood tests. My heart is the same as last year, so they have no idea.

        Lisa, I do think the medication may be the issue. I've been on toprol since the operation, but I liked Attenenol better.

        Jerry

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        • #5
          Re: Long time no post - new issues

          I think a good long tal with Dr. Lever may help you access the situation and find an alternative.

          Lisa
          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)

          Comment

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