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My son just diagnosed!

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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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  • My son just diagnosed!

    My name is Janet and my husband was diagnosed with HOCM in 1995. His septum measured at 19.5 when he was 35 and diagnosed. Two years later his brother was diagnosed as well. They both have AICDs implanted. A year and a half a go, my husband left the kids and I after 20 years of marriage for a younger wife. He has not seen the kids in 16 months. We don't know where he lives. The kids do get an occasional phone call. Anyway, back to my son. I have been taking my kids to get checked every year since he was diagnosed. This past Friday, we went for our yearly check up and my son was diagnosed. He is 11 years old and his septum measured at 18. The doctor could not believe it has went from normal 12 months ago to that. They have put him on Toporol and will be doing echos now every three months to see if it continues to progress that rapidly. Needless to say I am terrified. My 9 year old daughter and I were in a wreck 9/10/04 and she spent 11 weeks at Egleston Children's Hospital in Atlanta with Traumatic Brain Injury, Basal Skull Fracture, facial fractures and numerous other injuries. She is still not healed. So you can imagine as a single mother I am quite overwhelmed.

    Anyway, I was wandering if there is anyone else around my son's age who has been diagnosed and how they are doing. 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
    Hello Janet,
    Welcome to this wonderful place of support! You are in the right place for support, and information about HCM from a great bunch of people. I can't answer this question, but I wanted to send you my thoughts of support and caring. You are not alone in this strange world, you have found us and we are here to help as best we can.

    I am truly saddened about all the stuff that you have been having to deal with on your own. I was a single parent, too. Sometimes the burden of it all gets to you, but know that "this too will pass" and you will see the light again.

    I am sure there are several people (parents of youngsters) on the board that will be able help you with your struggle. Plus, Lisa Salberg is also available by phone to help you find the answers for your son. Lisa is in the HCMA office several days per week. The phone number is at the bottom of this page. Plus, you can call Kelly any time during regular business hours to set up an appointment with Lisa.

    I wish you well in your struggles and that your children are both well now and in the future. Most importantly I want you to know that you are welcome to be a part of this wonderful group!

    Best Regards,
    Sharon

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    • #3
      Hi Janet. Welcome to the HCMA. I'm so sorry to hear of all your trials this past year. You're in a good place for both information and support. Please do give Lisa a call. She will help you figure out your next steps and will most surely make you feel better as you start this journey.

      Reenie
      Reenie

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

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      • #4
        Hi, Janet,

        My heart goes out to you. Your basket of troubles is very full right now. I hope that you will find that your son's HCM is only a small worry and does not lead to any serious long term problems. This is a definite possibility and is what I will be praying for for you.

        Rhoda

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        • #5
          Janet,

          We can not change the past but we can help make the future a little better - WELCOME to the HCMA. You are amoung friends.

          Please take some time on Tuesday and call the HCMA office we can discuss what we can offer you and your family in means of support/referal and a we are always here to listen.

          Best wishes to your entire family,
          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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          • #6
            Janet, we all forgot to give you the phone number. Here it is: 973-983-7429.

            Reenie
            Reenie

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

            Comment


            • #7
              Thanks so much!

              I was overwhelmed with the kindness and concern of the replies I received. I appreciate each one of you taking the time to reply. I will definitely be calling the office. Thanks so much and God Bless ! 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.

              Comment


              • #8
                Janet Wlcome to our site

                And yes talk to Lisa she is a great resource of information, she definetly helped me, my son also has the disease my son is a quite a bit older then yours but it doesn't matter how old they are it still hurts to know they are sick, i hope after talking to Lisa you can find some answers

                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


                • #9
                  Janet, Welcome, I'm glad you've found us. You will receive much support, caring, and concern here. I hope you are also receiving the same for your daughter. You have a tremendous load to carry. I wish you the best and will be anxious to hear how you all are doing. Linda

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                  • #10
                    Welcome aboard Janet,

                    You have come to the right place and do not have to struggle alone without support anymore. We are all here to help.

                    Best 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


                    • #11
                      Hi Janet,

                      Welcome from Roswell Georgia.
                      Give Lisa a call Tuesday. I think I know who she wants to refer you to.
                      Atlanta is very strange when it comes to HCM. It has excellent care for children and teenagers. It has sub standard care for adults. Hopefully this can be upgraded over the next few years.
                      Let us know how things go.
                      Fx

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                      • #12
                        Hi Janet

                        Welcome to our community. I see that you are going to call Lisa. That is a great start.

                        I can't imagine the stress you are under with so much to think about and try and deal with them, too.

                        The people here are so caring and have had so many of the same problems.

                        I hope you feel comfortable to ask questions, talk about your concerns or just vent. We are here for you

                        Please keep in touch.

                        Take care
                        Esther

                        Comment


                        • #13
                          Hi Janet- My name is Heather and I have children the same age as your children. My husband has HOCM so far the kids are ok but I worry about them alot. I am so sorry life has been so difficult for you lately. My prayers are with you.
                          Heather B. My husband is 37 and has HCM. He had a myectomy in May 2002 and is doing OK now. We have 2 children, 11 and 9 and so far they are OK.

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                          • #14
                            Hi Janet,

                            I wanted to welcome you, too, and let you know that this is a great place for support. Take advantage of it.

                            I'm glad you will/have talked to Lisa.

                            My advice to you would be to find a good cardio for your son.

                            Good luck to you,

                            Debbie

                            Comment

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