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Back from Cleveland


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swinand Find out more about swinand
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  • Back from Cleveland

    Saw Dr. Lever at Cleveland last week. After reviewing things with him and his nurse practitioner I set out on a day of testing. Xrays, EKG, Echo, Stess Echo, and interogation of my new ICD so the stress test didn't set it off. Interestingly they found that in the time I had it put in (one week) I had 2 episodes of nonsustatained v-tach. The ICD is set to monitor at 145 BPM, fire at 165 BPM, and again at 185 BPM. The v-tach got up to 160 BPM. I met with Dr. Lever after all the test result came back, he recommended no myectomy. My HCM is of the Apical variety with the lower half of my ventricular chamber obliterating (muscle banging into muscle with no lower chamber remaining)with each beat. He felt any surgery would be of minimal value at best since there is not obstruction per se. After seeing my echo tape and discussing in detail with Dr. Lever I am satisfied it is the correct course of action for me at this time, although I'm still not sure why I have a 59mm/Hg gradient. (Dr. Lever felt it was the way my previous tests were measuring it with the obliteration...does that make sense??) He was positive about the recent ICD implant and encouraged me to be active to the level I can tolerate. More walking, general exercise etc. no heavy lifting or strenuous activities, now that I have the safeguard of the ICD. He is changing my meds to a mix of verapamil (which I was already taking 600mg/day) and Toprol XL. He lowered the verapamil after raising his eyebrows at the daily dosage to 240mg/day and added the 50mg/day of Toprol. My wife felt the visit was well worth the journey. She learned more yet about HCM and gave her a sense of reassurance and comfort things are under control for now. Of course getting from Delaware to Cleveland was no small feat. For those of you not on the east coast it has been bitterly cold here, and LOTS of various forms of precipitation last week. We hit them all on the way. Sleet, freezing rain, snow etc. etc. Made for quite a journey.

  • #2
    Re: Back from Cleveland

    I'm glad you had the implant and that all is well. Take care of yourself!


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


    • #3
      Re: Back from Cleveland

      Thanks for the update. You have shown yet again how a visit to an HCM center can improve your care and quality of life.
      I am glad all went well.

      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: Back from Cleveland


        I am glad everything went for you , I like my ICD it's my security blanket as i had alot of VT in the last few months i feel it may have saved my life, i'm glad you made it through all that weather and safely at home, Take Care

        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


        • #5
          Re: Back from Cleveland


          Glad to hear your trip went well... it was a heck of a week to go skating across the northeast to your appointment. I'm looking forward to seeing this crazy weather end!

          "Some days you're the dog... some days you're the hydrant."


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