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  • trip to n.e.m.c.

    today i went and met with dr.maron we think i might have hcm i had a stress test and echo done today and it said i didn't have any thicking but my cm was thick my( valve is thick ) i will go in july for an mri we also did genetic testing today so when i go back in july we will find out more news also dr.maron will sit in on my son's echo in july so we can get down to the point and find ouut what we are going to do for him as well as me i might need a icd i can't lie i am alittle scared but i am so happy that i found out and also very proud of my self for taking care of my self i always put my self last and never take care of my self with stuff like this and this is all thanks to lisa thank u so much for the courage to do this for me and get me set up

  • #2
    Re: trip to n.e.m.c.

    i also did a genetic test for n.e.m.c. to do a study on me they were doing it but i will never know what happens because it is for doctors in general to understand about hcm i was so pleased to see that the are trying to find out more about the genetics that carry hcm when doctor maron asked me there was no question i said were do i sign i am so happy to have done this thanks again everyone i will keep u all updated god bless and stay strong

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    • #3
      Re: trip to n.e.m.c.

      Didn'' you love Dr. Maron! He is really great. My 14 year old son got his AICD there two years ago. Dr. Link put it in. Also, they did his open heart surgery there a year ago. Everyone there is just awesome. Did Jessica do your echo. We follow up there once a year. They are great! Janet
      My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

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      • #4
        Re: trip to n.e.m.c.

        yes they are she did do my echo and dr.chris did my stress test they all couldn't get over my 2 year old the whole time i was in there he kept looking for me saying mommy peek a boo it was a really comfortable place of course i wore heels thank god i had sneakers in the car

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        • #5
          Re: trip to n.e.m.c.

          Janet ,

          To my knowledge, the "Jessica " whom you are referring to left NEMC last Oct. I saw her for my last visit and got the bad news on that day.( that was her last week at NEMC). She went to the Lahey Clinic in Burlington, Ma. It was a big choice she had to make but, best for her. Celeste also left and she was gone before I got there for my visit. She moved back down south with her family. I think the new girls name is Nancy( when you call) and for echo , well there must be another Jessica whom I am not familiar with.

          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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          • #6
            Re: trip to n.e.m.c.

            I missed Celeste she was always so nice! It was comforting when she knew me by my voice. Or is that a bad sign that you've had too many problems.

            I hope all goes well with your testing. I see Dr. Maron once to twice a year I love him to death. He is so caring and compassionate Drs. Link and Estes are also very nice. I think I may be on a trip back up there soon myself with these increasing problems.

            Mary S.

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            • #7
              Re: trip to n.e.m.c.

              well i had my genetic test done i just found out i do have hcm as well i guess all i can do is aceppt it but i am really not suprised i tryed to praper my self but i guess u can't in a way i feel me and my little angel (babygeorgie) have something to share well god bless

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