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felixdacat Find out more about felixdacat
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  • Back from NEMC

    Last week, just two weeks shy of the 6 month anniversary of my Myectomy, I was re-evaluated at NEMC.
    I’m doing (and feeling) great.
    There seems to be a lot of gloom and doom on the boards these days, so I thought I would throw in some selfish good news.
    Jessica, the beautiful and talented Echo tech, says that you can’t even tell that I had the surgery, at least not through her machine. Gradiant = 0.
    Dr. Maron (Marty) says to cut the Toprol in half (to 50MG’s), and said I could begin to do ‘some’ jogging and/or bike riding.
    I met a new member of these boards in the waiting room and we had a good discussion of the perils of HCM.

    NEMC is an excellent clinic to be evaluated and if needed, have procedures done. I have noticed in the last few months that many people are opting to go to Cleveland or the Mayo, even when those hospitals are farther away. The most obvious reason seems to be experience level. NEMC’s HCM clinic is barely a year old.
    I want to dispel this notion. Dr’s Maron and Udelson are extremely knowledgeable about our condition. Dr. Rastegar is a highly skilled Cardiac-Thoracic surgeon who can do a Myectomy with the best of them.
    One of the goals of our organization is to have HCM clinics open in every major city in the USA. Personally, I would settle for all of the major regions. There is definitely a need for 1 or 2 clinics on the west coast, perhaps 1 in the Rockies, 1 each in both the southwest and southeast.
    Any hospital entertaining opening an HCM clinic is going to look long and hard at what is happening at NEMC.
    We need to support NEMC’s efforts.
    It no longer is brave to give them a try. With one year under their belts, it’s actually a smart move.
    So the next time a newbie is asking where they should go, tell them to head to New England.
    Fx

  • #2
    Re: Back from NEMC

    I second these comments by Felix regarding NEMC. In fact recently I spoke with Celeste at the clinic. She said they are getting so busy they may have to increase to 2 days a week. They are getting many local referrals from docs who now are aware of the center and from docs who realize they may have taken their HCM patients as far as they could and it is time for the clinic docs to see them to try and help.

    Anyone who is hesitant need not be. They are by far the greatest team of specialists I have ever been to .

    Now surely from all my postings you can tell that I go to a lot of specialists for different problems and I am a nurse as well. So I am very skeptical and a hard sell.

    Best wishes to all. 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

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    • #3
      Re: Back from NEMC

      Oh and Felix , I am so very glad you are doing great.Keep up the great work. Just watch that heat down there.

      I go for my check on the 20th and my younger 2 go also.

      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
        Re: Back from NEMC

        Felix

        That is great, i hope all the best for you and that is a great pick of you and your little girl

        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

        Comment


        • #5
          Re: Back from NEMC

          Hi Felix,

          Glad you are doing well... woo hoo! That's great news!

          I think most of us are naturally going to be attached to our old 'alma mater'... so one would expect you to recommend the NEMC, while those of us who have been to Cleveland are going to speak highly of the folks there. I think it's just human nature. I don't think anyone has anything against the NEMC personally. But we can only speak from our own experiences... and there are simply a whole lot more of us who have been to Cleveland than to Boston. No need for any rivalry.

          Stay well, Felix. I'm so happy to see that your own days of 'gloom and doom' are well behind you now!

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

          Comment


          • #6
            Re: Back from NEMC

            Felix,
            that is GREAT news!! I am so glad to hear you are doing just fine!! Aren't they wonderful doctors there? I am always so thankful that my previous cardiologist referred me there. I would never have know it existed
            \"It is not length of life, but depth of life.\"

            Ralph Waldo Emerson

            Comment


            • #7
              Re: Back from NEMC

              No rivalry intended Jimbo. In your case, Cleveland was actually closer than NEMC.
              I just want the board to understand what is at stake.
              Can you imagine a future where there are 8-12 HCM clinics throughout the United States?
              Can you imagine a time that no HCM patient would have to travel more than 5 hours to see a cardiologist with solid HCM expertise?
              Can you imagine what that would do to the ‘average’ cardiologist’s knowledge level of HCM?
              What if a New Orleans cardiologist could say to their patient “You should see Dr. Schmoe at the HCM clinic in Houston”?
              What if a Tucson patient could be referred to a Phoenix Hospital? Or a Cheyenne patient being sent down to Denver?
              The present key to this future is the success of NEMC.
              My point isn’t that NEMC is better. It’s that it’s EQUAL! You will get the same level of care and expertise at all 3 clinics. This should be the way this board approaches the subject of where to go, when a new member puts forth the question.
              I would greatly look forward to a day when geography is the decisive factor for choosing an HCM clinic and not “How many Myectomys have they done?”, or “How long have they been treating HCM?”, or “How many ICD’s have they put in?”
              Personally, this is going to be my approach when I respond to postings or talk to people on the phone. “Go to whichever clinic is the most convenient for you, because they are all great”. “ And I hope I can begin saying that about the fourth HCM clinic and then the fifth.
              Fx

              Comment


              • #8
                Re: Back from NEMC

                Felix -

                I think your thoughts are great. I can't wait until there are more HCM clinics and a person can just go to the closest without any other concerns. What a wonderful day that will be.

                I am glad to hear that you are doing so well. Great news!!!

                SheliRenee
                Mom of Keanu
                4 years old (will be in March)
                Dx at 2 days old with Biventricular hypertrophy
                Dx at 6 weeks with HOCM
                Dx at 5 months with V-tach
                Dx at 3 with Noonan Syndrome

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