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James finally went to doctor!

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Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
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  • James finally went to doctor!

    Today I took James to his cardiologist. They did another echo of his heart and it appears that his heart has gotten worse. His septum measurement has gone from 18 to 21.5 and his gradient is back in the 60s again. The doctor also said today that James was very pale. They decided to increase his Toprol again. He is now taking 75 mg. He is taking 50 mg in the morning and 25 at night. We have to go back in two weeks. They consider his heart unstable right now. They also told me that they do not want him doing anything at all the next two weeks. They don't want him riding his four wheeler, being outside sweating or doing anything. James also measured at 5' 7 1/2" today as well so he got even taller. So now I will be keeping a close watch on him and see what happens. Today his blood pressure was 134/80 and that was him on 50mg of Toprol. His heart rate was also at 99. I was surprised it was that high and so was the doctor with him being on Toprol.

    They did say that there are several medicines he could try out and he did tell me that he could be facing a myectomy if things don't get better.

    They did determine that his heart did go into VTach when he got shocked last week. So he is dealing with quite a bit right now!

    I'll keep you posted
    Thanks, 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.

  • #2
    Janet,
    I am glad you finally got some answers. I am sorry to hear that James has been placed on strict limitations, but it is only for a short while. You are in my thoughts and prayers.

    Best wishes,
    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)

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    • #3
      Janet, I'm glad you got him to the doctor and have a plan of action. I hope the medicine increase will be enough to make him feel better. Please keep us posted.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

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      • #4
        Hi Janet
        I'm so glad you got some answers. They may not be the answers you wanted, but now you know that the shocks were needed.

        I imagine that James is an active young man so this will be tough on him as well. I hope he is into reading, tv games, etc to help pass the time.

        I hope that the increase in medication is a solution.

        Please let us know how James is doing.

        Take care
        Esther

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        • #5
          Janet, I will be thinking of you and James, keeping you in my prayers. Please keep us posted, Best wishes - Linda

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          • #6
            Janet,

            I am sorry that James is now having to be restricted. I am sure this whole thing has taken an emotional toll on James. I am however glad that he is back with you. I am confident that you will help amuse him through this time and make it easier for him. He is so so lucky to have you as his mom. I know this is very hard for you as well if not harder to wait and watch. You are both in my thoughts.

            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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