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Largehearted I miss living in Europe, specifically Munich, GermanyI like to think out loud. Some of my ruminations can be found at beinganddoing.wordpress.com. I love to cook and eat, but hate to clean up. I tend to be confident in my opinions, but will change when presented with a compelling enough reason/argument. Find out more about Largehearted
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  • #1

    Back from CCF

    Good morning everyone.

    I just returned from my encounter with Dr. Lever in Cleveland. Wow! Those folks do thorough work. Anyway the results of all the testing are as follows. I am a class 2 functional. They thought for a while there was more obstruction, but Dr. Lever and the echo tech ran another echo at the end of the day and both studied the images together. They finally decided that while I almost have SAM, my mitral valve does not quite make full contact. Thus for now he took me off one med and said I should see him in a year unless complications develop.

    I was very impressed with Dr. Lever. In addition to being one of the world’s best in HCM, I was impressed with him as a warm, friendly human being. He spent a lot of time with me (much more then my regular cardiologist ever has). That was helpful as I was able to ask questions and get some answers. He even offered advice on the best way to get out of Cleveland as I arrived in the middle of a nasty snowstorm.

    So for now I will live within my limits, pay attention to my symptoms and take my meds religiously. I am happy to still be on the planet. I pray for the people on this board and the families represented here regularly. May you all have a wonderful holiday season.

    Peace,

    Leon
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness
    Tags: None
  • #2
    I'm glad that you had a good report. Was the drive home all right? I heard you guys in that area were getting dumped on, again. So much for dreaming about that White Christmas.

    Reenie
    Reenie

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

    Comment

    • #3
      Leon,

      Glad to hear the news was good and your check went well. Yes we are all lucky to have these great doctors who I have personally found are great people as well as doctors.

      Glad earth is still your home base too. Thank you for all your many prayers for all of us.

      Happiest Holiday wishes to you , your family and everyone on this board .

      Pam
      Dx @ 47 with HOCM & HF:11/00
      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
      Lead failure,replaced 12/06.
      SF lead recall:07,extracted leads and new device 2012
      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
      Genetic mutation 4/09, mother(d), brother, son, gene+
      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

      Comment

      • #4
        Leon,

        Sounds like you got a very thorough workup! I'm glad your experience in Cleveland was a positive one. You have a very Happy Holiday as well!

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

        Comment

        • #5
          Leon

          What a great report, i'm very happy for you

          Shirley
          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

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          • #6
            I'm glad you had a good report. I hope the reports continue to be good for a very long time.
            49 yrs. old
            Diagnosed at 31.
            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
            My brother passed away suddenly at 34 yrs old from HCM.
            2 teenage children, ages 17 and 15.

            Comment

            • #7
              Leon,

              I am very happy to hear that you did so well. I am also very happy that you finally got to a specialty center!

              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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