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Any other problems with your ICDs?

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Amber Mom of two, wife of one, living with HCM since 1999 Find out more about Amber
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  • Any other problems with your ICDs?

    Hi, my name is Amber and I am new to this message board. I'm 24 years old and I have hypertrophic non-obstructive cardiomyopathy. I have had an ICD for 2 years in June. I have been very uncomfortable with it. It seems to move around and I never seem to get comfortable especially when trying to sleep. I have had more chest pains since I have had this ICD. My cardiologist tells me that I'm young and not used to discomfort and this should explain my pains. Am I being overly sensitive? Does everyone's ICDs do this?
    Always and forever, all I do is for you MOM!
    Vicky Keller
    1955-1999

  • #2
    Re: Any other problems with your ICDs?

    Amber--I don't have problems with my ICD other than finding certain sleeping positions mildly uncomfortable. Your ICD shouldn't be causing chest pains unless you are talking about skin-level type pains (and those should be mild); it should not be affecting your heart in a negative way. And it shouldn't be moving around within its pocket. Should be like a big thickening of your skin after, I think you, said seven months. Have you visited the website for ICD users, www.zaplife.org? You can get lots of advice from people who seem to have had problems with their ICDs. The one thing you must remember on that website is that there are people with lots of other types of heart problems and other health problems that you don't have so take what is helpful and don't get too concerned with the rest.

    Predicting what I think you will hear on "The Zapper" site, find a new cardiologist or a new EP.

    Best wishes,

    Sue

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    • #3
      Re: Any other problems with your ICDs?

      Amber hi and welcome, I know it has not often been mentioned here so I never have brought it up but I too often, not all the time feel uncomfortable with my ICD ;placed 3-13-01. At night it is often disturbing esp. on those nights when I am disturbed anyway. I feel like there are crawly things under my skin there and realize it may just be that my pacer has kicked in for a low heart rate or that I have 2 fans blowing and my Bi-pap machine going and it may be wind turbulence blowing against a sensitive area. Nonetheless it disturbs me ; however it does not cause my chest pain. For the position I used to love to sleep on, left side, it is only now comfortable for about 15-20 minutes. I find that putting counter pressure against my upper left chest with a firm pillow or tucking the blanket tightly under that arm helps me to get that feeling under control so I can fall asleep. Give it a try but do speak to your cardioligist or EP doctor regarding the chest pain and this problem as well, they may have some suggestions. Have you lost a lot of weight since it was placed? Good luck to you. 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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      • #4
        Re: Any other problems with your ICDs?

        Amber,
        I have my first device when I was about 22-23 years old. I do not agree with the "your not use to discomfort' nonsense. I would strongly suggest you seek a second opinion. I have had 3 devices in my life the 2nd one was rather large (guident Ventak AV - 1st DDD pacer/ICD 4 days after FDA approval) - Non of my devices have EVER caused discomfort (after the initial 2 weeks after implant)

        I would love to speak to you sometime, but will not be back in the office until the week of March 15. Maybe we can chat sometime soon.

        Take care..oh and I will take a guess that whatever you do you mom is very proud of you!
        Be well,
        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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        • #5
          Re: Any other problems with your ICDs?

          Amber, In 1996, my son's ICD was huge for a small 12 yr old's shoulder, it was of the earlier generations of ICD's. He has never seemed bothered like you are describing so don't accept it as a petty complaint. I will say that jumping on a trampouline (?sp) was out for him after the implant, but that activity is quite a bit of stress on something that was so big and heavy in a tiny chest. Good luck sorting it out, don't give up. Linda

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          • #6
            Re: Any other problems with your ICDs?

            “My cardiologist tells me that I'm young and not used to discomfort and this should explain my pains.”

            Is this clown the only cardiologist in town? I’d be happy to show him discomfort if it were me he was talking to.

            Listen to the women who already posted. They know from what they speak.
            Burt

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            • #7
              Re: Any other problems with your ICDs?

              Has anybody else noticed that if you lightly knock on your defib it sounds hollow? This usually works best if you are lying down. Some times I have a little too much spare time!
              Always and forever, all I do is for you MOM!
              Vicky Keller
              1955-1999

              Comment


              • #8
                Re: Any other problems with your ICDs?

                I never thought about this.... Guess I'll have to give it a shot!

                Reenie
                Reenie

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

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                • #9
                  Re: Any other problems with your ICDs?

                  Originally posted by Amber
                  Has anybody else noticed that if you lightly knock on your defib it sounds hollow? This usually works best if you are lying down. Some times I have a little too much spare time!
                  this is HIGH on my list of things i don't ever see myself doing. leave the damn thing alone i say--the last thing i want to do is rupture a lead or "kick-start" a misfire. yes, yes, i know they're very advanced machines but i'd rather not mess with them at all.

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                  • #10
                    Re: Any other problems with your ICDs?

                    Yes, I have knocked on my ICD and it sounds hollow. It just creeps my kids out and they plug their ears. I just do it to mess with them. It has not hurt anything yet. I just love messing with my kids. I know they like to mess with me. April 1st is always a lot of fun at my house. oK tell the truth how many of you knocked on your ICDs after reading that last post?
                    Have a great day.
                    Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

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