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My 12 year old son's Myectomy - 1/25/06 @ NEMC

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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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  • #91
    Great to hear there is an answer! PFO's are very common - sorry that James seems to have hit some unfortunately luck - but great news is this should not create any problems in the future.

    Hang in there!
    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


    • #92
      Janet,

      So glad they got to the issue that was causing James so much trouble. So now he just has to rest , and get stronger and recuperate. Sounds like he is going to head down that path. I think he will surprise us all and catch up fast. Many, positive thoughts and I thankfull that James is doing better.

      Now can you get some more rest? Hope so.

      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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      • #93
        Such good news to hear they have solved the mystery and it is nothing that needs intervention. I know this will bring you all some much deserved relief! And hopefully now some good rest!

        Best wishes
        Dolly~
        mom to Andrew(HCM) 21 years old
        Diagnosed \'95 age 5
        Myectomy \'96 age 6
        ICD implant \'99 age 9
        First ICD shock (X2) \'04
        ICD replacement surgery \'05 age 15

        *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

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        • #94
          Okay, GOOD NEWS at last. Now James can get back on track and get out of there. We'll stay tuned for more good news tomorrow and even better news on Wednesday.
          Cleveland Myectomy Club
          August 31, 2004

          Comment


          • #95
            I agree with Pam, children are so resilient and heal quickly. I bet he really kicks it in gear very soon. What a relief!!! I sense your sigh of relief in your words.

            Here's to building up strength!
            Keep plugging James!!
            Laura
            Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

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            • #96
              That is a real answer to prayer! I was so concerned that they would have to open hoim up again or something major like that. I will pray that he recovers faster than anyone could believe possible.

              Rhoda

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              • #97
                Thank goodness you finally have an answer and there is nothing seriously wrong! Now it's time for smooth sailing ahead.

                Rene'

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                • #98
                  Janet

                  What a relief! Many prayers have been answered. The days ahead will only get better.

                  You and your husband need to take it a little easy. Being a parent, I know how concerned you were and if you are like me, you were imagining the worse.

                  Take a deep breath and thank God for his guidance.
                  Esther

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                  • #99
                    Janet

                    I bet you are relieved, I know I would be, Now you get some much deserved rest James is still going to need you, I hope there will be nomore hurdles for him Hugs

                    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


                    • Hey Janet:

                      I think that I forgot to mention this in my topic thread, but I also had a PFO repaired two weeks ago when the myectomy was being performed. Dr. Smedira claimed that it was "large" in size and was a little shocked that it was not picked up on any of the pre-surgical echos that were done.

                      Anyhow, it was apparently a fairly routine patching procedure and the repaired PFO held the saline "bubble test" they did on it during my first post-surgical echo.

                      For what it is worth, the echo technician doing this test told me that PFOs have recently been linked to migraine headaches in a few studies. I don't know if James has had a history of them, but migraines were becoming frequent for me over the last 2-3 years. Maybe this will be an added benefit?

                      Glad to hear that the docs have solved the big riddle!

                      Talk to you soon-

                      Mark
                      Lexington, KY
                      Age: 38
                      Wonderful wife of eleven years (Gena) with three great kids (Lindsey, Conner and Laney)!
                      HOCM diagnosis: January 2004
                      CCF Myectomy Club: January 16, 2006

                      Comment


                      • Janet,

                        I am so happy to hear that things are looking up. In time, things will be much better. James, you and your family continue to be in my thoughts and prayers.

                        Many hugs,

                        Eve
                        49 yrs. old
                        Diagnosed at 31.
                        Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                        First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                        Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                        Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                        My brother passed away suddenly at 34 yrs old from HCM.
                        2 teenage children, ages 17 and 15.

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                        • Good Morning! James had a really good night and the doctors feel really good about the progress he is making now. We thought we would go to a regular room this morning but they have decided they want to keep him in ICU for another day. I don't know if there is a particular reason, or if they are being very cautious after what happened the last few days. So now he will just hang out in the ICU again all day and hopefully go to a regular room tomorrow and then hopefully home soon. Thanks so much for your prayers. James has come a long way. Dr. Maron came in a bit ago and told James again how proud he is of him and that he will be like a new person once his heart is all healed. I'll keep you all posted if anything changes. We appreciate all your thoughts and prayers! 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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                          • Hi Janet

                            I am so happy to read that James had a good night. I pray that he is "out of the woods" for any more unexpected events and that he will soon be able to go home.
                            I am very proud of James, too.

                            Give him a big hug.
                            Esther

                            Comment


                            • Janet, I have been away and have just now read through your posts regarding James' surgery. So glad everything seems to be back on track and James is finally feeling well enough to eat. All of you will be in my thoughts, as James continues to recover.
                              Don't forget to take care of yourself too.

                              ((big hug))
                              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.

                              Comment


                              • That's GREAT news!
                                Pace Bene,
                                Matt

                                Diagnosed with HOCM 2003, ICD Implant on 3-3-05, Extended Myectomy with a Mitral Valve Plictation at St. Luke's in NY on 9-27-05

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