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Marty from Boston area - new member but ready to jump in

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MartinKennedy Find out more about MartinKennedy
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  • Marty from Boston area - new member but ready to jump in

    Hi. Just a quick intro; I am a 51 year old, about 17 years post-diagnosis (IHSS now HCM) and have been taking beta blockers all this time with pretty good results. Last few months the symptoms of shortness of breath, pain, etc. just got to be a real nuisance and through an echo we found a very high interal bp along with clearly advancing thickness so....I am planning to have alcohol septal ablation at MGH with Dr. Michael Fifer in a few weeks.

    I am feeling calm and confident but kind of shocked that this is happening so quickly. My wife and kids are taken aback by my recent deterioration.

    Any help, support, advice from locals or others would be much appreciated.

    Love,

    Marty (I was a member a while back but lapsed, back on board now)
    Alcohol ablation January, 2004. Stent placed, September, 2003. Now...at age 53...working out, building a cabin, sober and clean. A 2nd chance at life. There is hope, there is a future. Have faith.

  • #2
    Re: Marty from Boston area - new member but ready to jump in

    Hi, Marty:

    I live in Florida now but I'm from Arlington, Mass. and in fact lived in Winchester for a year or so back in the early 70s. Back in my semi-hippie (and pre-HCM) days -- it was a small commune in a big old house on a street that I can't recall with a bunch of people I lost track of many years ago. Sorry to hear about your change in symptoms. Hope to hear about your experience at MGH and hope you feel better. I'm 56 and have had symptoms for 35 years but was just diagnosed in February.

    Bill

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    • #3
      Re: Marty from Boston area - new member but ready to jump in

      Marty, Welcome back. Best wishes for success in your treatment. I'm glad you're feeling good about it. Keep us posted, Linda

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      • #4
        Re: Marty from Boston area - new member but ready to jump in

        Dear Marty,

        Welcome back and best of luck with the procedure. You can use the search function here to look up other people's already posted stories of their ablation and how it went, too.

        keep us posted,

        S

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        • #5
          Re: Marty from Boston area - new member but ready to jump in

          I would ask how many ASA have been done at MGH with Dr. Michael Fifer. I have not heard of many at that center. I would make sure that your mitral valve is in good shape and the septal measurement is proper for this procedure.

          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


          • #6
            Re: Marty from Boston area - new member but ready to jump in

            Hi Marty

            Welcome back. I'm 52 myself and diagnosed 20+ years ago. Hope all goes well for you. Keep us in the loop.

            Reinhard
            Diagnosed in 1980, ICD Implant 2003, 2nd ICD in 2010.
            Gene Positive, As is my mom as well as one of my 2 sons ( 50% Rule ) and my Grandson.
            Non Obstructive. Atenolol

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            • #7
              Re: Marty from Boston area - new member but ready to jump in

              Hi Marty, I,m soon to be 51, and I was diagnosed at age 16. I,ve had alot of symptoms and they have been more progreessive in the last few years. I had my mitrel valve replaced in april 2003, and have been less symptomatic since. Be sure to have a very thorough work up before any type of proceture.I was very pleased with the care I recieved at N.E.M.C.
              Good Luck and Keep the faith Dennis

              Comment


              • #8
                Re: Marty from Boston area - new member but ready to jump in

                Looks like the 50 something party is forming here!


                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


                • #9
                  Re: Marty from Boston area - new member but ready to jump in

                  marty,

                  i hope you are well and feeling a little more in control of things. best wishes for the procedure and recovery. out of curiosity can i ask what your septal measurements were before the recent advancement in thickening and what it has gotten upto since?

                  regards,

                  mongo

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