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  • I'm scheduled to see Dr Lever

    Hello, it's laga, now eatwell, which better suits me.

    My tapes arrived overnight to Dr Lever yesterday and last evening he called once again. He talked to my husband and I for nearly an hour, just amazing! He reviewed my TEE taken down here and he said he felt something was wrong with my mitral valve, yet he couldn't fully determine what, he said it's not typical, but it's a problem. He said, my thickness at 15mm isn't all that thick yet obstructive as it's located right at the valve. So, he strongly feels OHS vs a ablation is the right course so the valve can be repaired and septum thinned somewhat. He didn't rule out the possibility of a replacement valve, but said, 'we consider that a defeat here and do everything possible to avoid it'. The good news, much to my husband's relief is that Dr Lever felt my HCM is far from the worst he's ever seen. So, if I can get this taken care of, I might be in good shape for awhile. He said that he would definitely repeat the TEE up there and other standard tests. You all said he would do that, he commented that 'they' never take enough pictures and the views are just inadequate to develop a clear plan of action.

    So he's squeezing me in July 6th, told me to plan on ALL day and late into the evening. I imagine there will A LOT of wait time between things. I also have to stay the next day to do the TEE in the morning. Tests follow a certain set schedule I guess.

    Anyway, he was very leisurely on the phone, much more so than the first phone call earlier in the week. He asked what I did for a living and spent a good bit of time talking to my husband about his career. We were very much at ease with him and so impressed with his personable nature. You can tell you're not just a number with him.

    He even went onto say, he didn't need the business (swamped with work) but he wanted to help me. He seems to be everything you've all said. He even praised the Mayo clinic saying 'we do and believe things generally the same way'.

    What a relief to feel I will get the best care, even though I wish I could avoid it!!

    Laura
    Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

  • #2
    Laura,

    It certainly sounds as though you are in the best hands possible. Although my surgeon here is good and knowledgeable about HCM, the cardiologists I see just don't seem to get the big picture. You are really lucky to have access to the best.

    Best of luck to you.

    Paul.
    Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

    Comment


    • #3
      laura,

      you are in great hands with dr. Lever - as you an Ohio resident it is the obvious choice for you based on location...but it is a great choice because they truely understand HCM and will give you the best care. We are very lucky in the HCM community to have several great centers availalbe for treatment!

      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)

      Comment


      • #4
        I'm glad that Dr Lever has had time to review your records and called you. He's a great doctor and I think you will be really pleased with your care from him. Best of luck in a few weeks.

        Reenie
        Reenie

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

        Comment


        • #5
          And I want to thank all of you, without this website and community, I wouldn't be moving along with my care as quickly as this. And, I've learned SO much here. The site has been a blessing. I remember looking for something like this when I was diagnosed in the early '90's and there was nothing. So, I am glad I can benefit from it when I need it the most.

          Thank you Lisa and the whole team of moderators, etc. I feel blessed to have found you.

          Laura
          Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

          Comment


          • #6
            Dr. Lever is so great. He spent a lot of time talking with you on the phone.
            You have the best care available to you.

            Now I have to go back to my regular cardiologist who spends maybe 5 to 7 minutes with me and when he reads my chart, he always scratches the top of his head.
            (sigh)

            Please keep us updated about everything.

            Hugs,
            Eve
            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
              Laura,

              I am glad you are getting the best help possible. We as a community really are fortunate to have some great places to choose from.

              Best of luck to you.

              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


              • #8
                Laura,

                So glad to hear you’re going to Cleveland in just a few weeks.

                When you’re in the exam room at the end of the day waiting for Dr Lever and you think everyone went home, well they did. But just sit there. Everyone went home but Dr Lever.

                Wishing you the best.

                Stuart
                Cleveland Myectomy Club
                August 31, 2004

                Comment

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