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AICD to be put in 11:00 Tuesday!

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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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  • #1

    AICD to be put in 11:00 Tuesday!

    Just letting you know that the surgery will be Tuesday at 11:00 a.m. I spoke to Dr. Link this morning and he said that 1 in 20 people that know they have HCM have AICDs. Of course that figure is a lot less with children. I was curious what the ratio was. We have to be at the hospital at 10:00 a.m. and they are going to do it at 11:00 a .m. I will try to get access to a computer to let you guys know how it goes. James is doing pretty good so far. I am glad the insurance finally went ahead and approved it. I appreciate all of your kind thoughts. I am so thankful to he here at NEMC.

    Today we went to the Science Musuem and road the Duck around Boston and in the Charles River. It was very nice. We'll write soon! 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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  • #2
    Janet.

    I wish you all the best for today. Tell James that he will be lifted up in prayer as he undergoes this procedure. I am sure he will come through just fine. I play golf with my device and so far it has not made my game any worse. I am just as bad as I was before I got it implanted!

    Peace,

    Leon
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

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    • #3
      Janet and James. Best Wishes and many prayers. We'll be here thinking of you both and waiting for an update. Take care.

      Pam
      It's not what you gather, but what you scatter that tells what kind of life you have lived.

      Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

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      • #4
        Janet please keep us updated and my prayers go out to you both


        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

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        • #5
          You're in my thoughts and prayers too.

          Reenie
          Reenie

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

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          • #6
            Janet , I hope all went well . How is James feeling ?

            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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            • #7
              James doing well!

              Sorry I did not get to update yesterday. I did not have access to a computer after we got back to his room. The surgery went well and he is doing pretty good. He slept most of the day yesterday. When we got back to the room he was pretty relaxed. He drinked some gatorade and then became very nauseaus and did have some throwing up. He did not feel like eating till late last night. They have his arm in sling and he has not been able to move much for the first 24 hours.

              Dr. Link told me that James was quite amazing and was handling things better than most of his adult patients. He said he was very mature for a 12 year old boy. And he only just turned twelve a couple of weeks ago. Dr. Link called and spoke with James' cardiologist and we will be following up with him next week and then again in 6 weeks and then every three months. They have James' AICD set to 207 beats a minute which means if James' heart starts beating that fast he will get shocked.

              He did not rest well at all last night and when they sat him up in wheel chair this morning his shoulder got to hurting so bad he was crying. James has this macho thing that he doesn't want to admit he needs anything, but there is no sense in him having pain. We are now back in the EP Lab and they are retesting his device. They are putting him to sleep to do that. We will go back to the room and spend most of the afternoon at the hospital and will go back to the hotel and then go home tomorrow. James keeps saying he wants to go home.

              So anyway, things are going well. The doctor did say since he was a child his pain would be more than adults because his muscles are firmer and more taunt. Where adults are more loose and flabby, if that makes any sense. I hope he will do okay on the plane ride home.
              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.

              Comment

              • #8
                Thanks for updating. He will feel better each day now and you have a safety devise on board him that will now let you have some peace of mind. Tell James we are all proud of him. He is very lucky to have you too mom. Get Well Wishes.

                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

                • #9
                  Janet,

                  Thanks for the update! I know that there are many folks on the board who will be glad to hear the good news. James is doing phenomenally well for his age and i'm sure you're very proud of how he's handled all of this. There've been quite a few adults (myself included) who cried a lot more than James did after our surgeries! LoL.

                  You take care and give James our best.

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

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