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Sorry Lisa

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Jaime1981 Find out more about Jaime1981
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  • Sorry Lisa

    Although I do not agree with the phone call, I admit to being completely wrong with the approach I originally took(please check the edited post from yesterday). I should had confronted you and not just thrown it out here on the forum. I will also admit that I should have only took what I wanted out of the call, it was not a package deal. Although I can agree with a little of what you said, I do not agree or even believe all of the medical advice you said, that is for the professionals to decide. I do think the organization is a great thing and well needed, I just think no one should be told what they did was wrong, so I think maybe the way you word things should be re evaluated. I understand you were under stress and the call should have been staled, but it wasn't and I think that is where a lot of the problem probably lied. Please just think about how you say things because to be honest it was really hurtful and made me feel like you either worked for one of the CoEs or you were a cult leader. Please just keep doing what you do for the organization. You are right, other than you and the organization, there is no other (or very minimal) information about HCM on the Internet! This web page really is a lifesaver! As is this forum! So please keep that up, just work on your wording and how you express yourself to others and I will too because I know I could have handled myself originally.
    Misdiagnosed with BAVD in 2010(it is a "good working order" tricuspid)
    Correct HOCM diagnosed February 2012
    Septal Myectopy on March 5th, 2012 ( over 85% removed and is still a little thick)
    Now on daily aspirin and metoprolol

  • #2
    Re: Sorry Lisa

    Hi Jaime,
    I wasn't in on your call, so don't know what was said. But I do know that guidelines from the appropriate professional organizations strongly recommend myectomy at centers with a lot of experience in them that have a lot of throughput, as well as evaluation by specialty centers. In other words, there are strong reasons for those recommendations -- someone doesn't have to work for those centers to make the recommendations.

    Gordon
    Myectomy on Feb. 5, 2007.

    Comment


    • #3
      Re: Sorry Lisa

      Thank you for your input Gordon!
      Misdiagnosed with BAVD in 2010(it is a "good working order" tricuspid)
      Correct HOCM diagnosed February 2012
      Septal Myectopy on March 5th, 2012 ( over 85% removed and is still a little thick)
      Now on daily aspirin and metoprolol

      Comment


      • #4
        Re: Sorry Lisa

        Jaime,
        HCM is overwhelming... and yes sometimes I may get on a role with calls and forget to breath and take into account that you are not living HCM 24/7 in the same way I am or the HCMA is (nobody does it the same!) You have a great deal on your plate and my sincere hope for you is that you and your family get all the care you need in the appropriate way! I see far too many of our HCM Family hurt by well meaning efforts from those who know a little about HCM - and yes I have my opinions on these matters and I state them - sometimes my NJ screams out.. and thats not a good thing all the time! So I too am sorry for any miscommunication none was intended. I deleted the other thread. I hope you stay with the message board and that we can someday speak again... this whole thing is a marathon not a sprint... we are here for you when and if you need anything.
        Be well!
        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


        • #5
          Re: Sorry Lisa

          Thank you and I am sure I will continue to post!
          Misdiagnosed with BAVD in 2010(it is a "good working order" tricuspid)
          Correct HOCM diagnosed February 2012
          Septal Myectopy on March 5th, 2012 ( over 85% removed and is still a little thick)
          Now on daily aspirin and metoprolol

          Comment


          • #6
            Re: Sorry Lisa

            On the COE deal. When first diagnosed locally (actually based on a call and consult by my local cardiologist with his former teacher at Tufts) he told me he wanted me to go to a COE. Even though we have a highly rated heart institute here they just don't have the expertise and experience with HCM/Myectomy's here. He said he was sure someone here could do it but they'd probably have a cookbook with instructions open during the operation - Ouch!

            The surgeon at the COE noted something unusual in my situation during the operation which led to a decision to alter the surgery a little bit. I'm pretty sure the old cookbook recipe would not have covered that. He was able to discover it and immediately what to do about it as a result of his many many operations of experience. I'm very glad I went there.

            Glad to hear you are gonna stay with the HCMA family and look forward to hearing from you from time toi time. Best of luck on your ongoing HCM journey.

            Toodle pip... Moosedreams
            Diagnosed HCM Nov 2009
            100 mg Atenolol; Baby asprin
            First Trip to CCF June 2010
            HCM Specialist at CCF... Dr. Harry Lever
            Septal Myectomy at CCF... August 9th 2010: Dr. Nicholas Smidera
            AICD w/pacer at CCF... December 20th 2010

            Once you choose hope, anything's possible. ~ Christopher Reeve

            Since we can not run in the park, we can be the ones to take a stroll, look around and enjoy the simple things in life. ~ Rosemaire1125

            www.TheRhubarbChronicles.com

            Comment


            • #7
              Re: Sorry Lisa

              Jaime - your post made my day.. Wishing you all the best!
              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


              • #8
                Re: Sorry Lisa

                Yea! We really are a big happy family (most of the time)
                Midge

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

                Comment


                • #9
                  Re: Sorry Lisa

                  Thank you for all the posts!
                  Misdiagnosed with BAVD in 2010(it is a "good working order" tricuspid)
                  Correct HOCM diagnosed February 2012
                  Septal Myectopy on March 5th, 2012 ( over 85% removed and is still a little thick)
                  Now on daily aspirin and metoprolol

                  Comment

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