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my kid..defib.


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  • my kid..defib.

    I post quite awhile ago about my son having some learning problems in school, etc.

    Now after his Holter Monitor and the recommendations of his primary cardiologist and two electrophysiologists (sp?) he needs an defibulator implant.

    My son (18) is going through some denial, so am I. I am divorced and my son is living with me.

    Are there any thoughts out there? Any comments? Suggestions would be very much appreciated.


  • #2
    Re: my kid..defib.

    Hi, Starman,
    I recall your earlier posts. I wish I had some deep wisdom or some great advice to give you, but please know that probably all of us understand that being a parent is hard at best, harder for a single parent, and extremely hard when a child is ill.

    To help yourself and your son, please understand that, having recently had an ICD implanted, I can tell you that it is not normally a great big deal physically. Most of the difficulty is emotional and spiritual as we are forced to face decisions about life and death at a time that seems unfair and somewhat surrealistic. Thus, I think it is pretty realistic to expect a teenager to be in denial. So, how can you help both of you? I think that recognizing that (at this time in your son's illness) this is primarily an emotional and spiritual problem more than a physical one and thus seeking emotional and spiritual help can help. After the implant is in, in my experience, the emotional and spiritual part becomes somewhat less significant and there is time for a physical recovery. I can say that having my dad die a week after the implant made the spiritual/emotional part harder, but now, even a few weeks later, I can concentrate on the physical more than the rest. However, I know from reading here and elsewhere that some people have personal struggles about ICD's even long after the implant. I have given some thought as to why I struggled before and others seem to struggle afterwards. I can't say for sure, but I suspect that struggling with the emotional and spiritual issues before the implant may allow people to move on afterwards. So, I suggest, with a great deal of understanding that I do not have all the answers, that you allow your son to explore how he feels about death and life and all those biggies.

    Perhaps I should add that my daughter had to face life and death at age 5 for a different condition. She continued to face these issues throughout childhood and into teenage. I just learned a couple of weeks ago that she transferred that fear to me that I would die before she could grow up. I really wish I had known, so I guess I am hoping that writing this will help you help your son address what is probably really troubling him. I will pray that you will have great wisdom!


    • #3
      Re: my kid..defib.

      Let him be an ative part of the learning process. Let the docs talk to him with and without you in the room. Let him know he can live a VERY NORMAL life with an ICD and that you want to make sure he is protected.

      TALK about what is going on and let him ask questions - if you do not know the answers - work together to find the answers - the HCMA is a geat place to search together for information!

      Good luck!
      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)


      • #4
        Re: my kid..defib.

        Rhoda and Lisa:

        Thank you very much for your responses. They are very much appreciated.

        So much of this post is to relieve my own anxiety. But a much higher goal would be to relieve my son's anxiety. I'm not sure if he is really that understanding and accepting or denial.

        So much seems to be putting your face to wind and going forward. It does sting, but it is the only direction one can go.

        I will be in contact.



        • #5
          Re: my kid..defib.

          Hi Starman and Son,

          I had my defibrillator implanted two months ago, after being in denial for four years of my heart disease. Two years ago they told me I needed to get a defibrillator implanted. It took that long for me to get it done.

          For two years I put myself through a living nightmare wondering if I was going to have a sudden death event. It is a mental h_ll. The sad part is that I have 15 years knowledge of HCM and lost a brother to a sudden death episode, so I should have known better.

          Denial and fear is your worse enemy and the defibrillator is not a big deal. My doctor anticipated me having panic attacks and all having the implant. It is not happening and I am fine.

          In the beginning it is uncomfortable because of your arm and of course the incision site. Adjusting to something in your body, but now it is like it isn't even there.

          I have been in A-Fib since August 6 and I am so thankful this defibrillator is in. That is what my brother was in when he had the sudden death event.

          I encourage your son as well you to read articles on his heart disease or talk with Lisa. If he has questions have him post a message in the HANG OUT message board, where there are kids his age or here. He is not alone and neither are you.

          I say go for it, as soon as possible.
          Good Luck to both of you


          • #6
            Re: my kid..defib.

            Lisa and Virginia:

            Thank you very much.

            We are slated to have the implant in mid-October. Right now my son is dealing with a bad tooth infection. Antibiotics, root canal, all that.

            Ya just do what ya gotta do

            Gotta ask my son what he did with his damned toothbrush though.



            • #7
              Re: my kid..defib.

              Hey Starman,

              I was suppose to have my surgery done in Boston. My son and his family flew in from Japan, to be with me. Well both times I scheduled both times I had gland infections.

              My son didn't find it too funny considering my daughter-in-law was six months pregnant and my two grandsons, were 4 yrs. old and 3 yrs. old.

              Life is a bowl of cherries and don't let no one tell you different. (yeah right)

              Good Luck with your son I am sure all that read this will be praying for both of you. Me too.


              • #8
                Re: my kid..defib.

                Hi Starman,
                You have said it so well , putting your face to the wind . You have no choice only in that it must be done . By showing your son that you are confident in his maturity and in his ability to face this head on and telling him you are with him every step of the way you will help him prepare emotionally for it. It is not easy young , middle age or older to face these things , but we do what we must and we get through it . Having the loving support of someone who really cares about us gives us all reason to press on.
                My best wishes to you and your son.
                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