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6 Weeks Since My Myectomy

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Heartbeat Find out more about Heartbeat
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  • 6 Weeks Since My Myectomy

    I am a new member to this forum, although I’ve been aware of it for several years. I was diagnosed with HOCM about 20 years ago. Since the diagnosis, I’ve been treated by my local cardiologist (I live outside Philadelphia.) I’ve never had any of the documented symptoms associated with HOCM, however, I did develop A-Fib about two years ago (It was successfully converted but returned about 9 months after the conversion).

    About 5 years ago, my doctor and I felt it best to have me evaluated by a specialist and I chose to see Dr. Theodore Abraham at Johns Hopkins. What a truly knowledgeable professional with an excellent bedside manner. His Team and the facilities at Hopkins are top notch. He initially took a very conservative approach and chose to treat with the same regiment of medication that my local cardiologist prescribed (Metoprolol and Verapamil.)

    As I continued to see Dr. Abraham, we noted that my gradient had increased to about 50 at rest and 120 when I exercised. He indicated that he had seen much worse than those numbers but felt it was important to lower them. With that understanding, I was prescribed Norpace (and we also spoke about the possibility of a myectomy or ablation should the medication not work) back in May 2012. I visited Hopkins again in December 2012 and it was determined that the Norpace was not working.

    At that point, Dr. Abraham indicated we needed to make a decision. It was important to lower the pressure within the heart. He provided information on both the myectomy and ablation options. He indicated that given my age (45) the myectomy may be the route to go. Having an ablation actually damages the heart muscle at the point the alcohol is applied and he felt this may not be the best method; however, through it all, he said it was my decision.

    I chose to have the myectomy and was referred to Dr. Duke Cameron. I met with Dr. Cameron and walked away thoroughly impressed. I did not look forward to the surgery, but felt I was in the best possible hands.

    My myectomy (along with a mini-maze) was performed on April 22nd and I was discharged from the hospital on April 25th. I was prescribed Amiodarone to try and ensure the A-Fib did not return. Unfortunately, a week after surgery the A-Fib returned and I was once again converted and have stayed in rhythm since the conversion. I am well aware of the side effects of Amiodarone and my local cardiologist is suggesting I stay on it until we reach the three month anniversary of my surgery. Both he and Dr. Cameron indicated the mini-maze takes about three months to be effective.

    It has been six weeks since the surgery and I am doing relatively well. I am walking about 5 miles a day and feel generally good. I am still a bit tired and not back to my normal self but certainly on the road to recovery. I highly endorse Dr. Abraham, Dr. Cameron and Johns Hopkins. I remain eternally grateful for all their efforts and hope my recovery remains on track.
    Diagnosed with HCM in 1992
    Myectomy at Johns Hopkins in April 2013

  • #2
    Re: 6 Weeks Since My Myectomy

    Hi Heartbeat, welcome to the message board. I am glad to hear how well you are doing. Walking 5 miles/day is quite impressive !! Those who have gone to Hopkins have resported similar experiences. They love both Dr. Abraham and Dr. Cameron!! Sounds like you are well on your way to feeling like a million bucks !!
    LindaSo
    Onward and Upward !

    Diagnosed 4/07 HCM with fixed & dynamic obstruction
    Myectomy with resected cordonae tendonae 4/08 CCF
    ICD 10/08

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    • #3
      Re: 6 Weeks Since My Myectomy

      I had a very similar run as you, I am 40 and was dx 25+ years ago. I took atenenol and verapamil got cardioverted a few time before I called Lisa from HCMA and realized I needed more than my local dr. went to Tufts and had very similar discussions with Dr Maron and his crew. I had the myectomy and the maze 3/13/12. Had a bout of afib about 2 weeks later and they cardiovetered and followed with 3 months of amiodarone. I walk about 3 miles per day, but could do more and I can lift 100lbs. good luck hope you saty well
      Go Bruins

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      • #4
        Re: 6 Weeks Since My Myectomy

        Great news for all of you. I guess I better get backward.king you are putting me to shame.
        Midge

        Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
        ICD&Pacemaker 1996
        Heart transplant March 19, 2004 @ Mayo Rochester
        Mom of Kaye.

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        • #5
          Re: 6 Weeks Since My Myectomy

          Heartbeat - welcome and thank you for sharing your story. It is reassuring when someone can tell of a personal experience with a facility. I wish you continued improvement and look forward to hearing more from you.

          Linda

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          • #6
            Re: 6 Weeks Since My Myectomy

            Amazing you can have major heart surgery and walk out 3-4 days later! Congrats on the impressive recovery!
            Marc
            Diagnosed @ 48
            Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
            Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
            AICD - Valentines Day '08, Spark Plug replaced 11/14
            After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
            Quietly going insane . . .

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            • #7
              Re: 6 Weeks Since My Myectomy

              Welcome to the board!

              It sounds like you're doing really well - that was a fast discharge, and if you're walking 5 mi/day this soon, I'm impressed.

              Gordon
              Myectomy on Feb. 5, 2007.

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