If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Icd Missfire

Collapse

About the Author

Collapse
dennis Find out more about dennis
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
  • #1

    Icd Missfire

    I had my ICD put in 12/1/01,it has been checked every 3 months.But for the last year or so every time I had it checked they had to make an adjustment.I had xrays done to look for a possible lead fracture,and there were no visible signs of that. So I went about my day to day routine until monday 2/2/04. I pulled into the Wall Mart in Gardner and reached for the ignition switch to shut off my truck when it happened. At first I thought I got a shock from my truck but soon realized that my ICD had fired. As I tried to call for some help on my cell phone, it fired again. After it fired a total of 7 times I figured out that my right arm movement ( my ICD is on my right side ) was causing it to fire. when the EMT got there I walked to the ambulance and got on the gurny and we went to the local hospital.In the ER their they had to get my shirt off to wire me up, so I had to move my arm. I bet you can guess what happened, it fired 2 more times.
    This small hospital does not have any equipment to check this thing,so I had to wait 6 hours for some to show up to shut it off. When that was done they transferd me to my docters hospital where I had to wait for my INR to go down enough so they could repair my bad lead, and then a few more days after surgery for it to go back up to a safe level so I could go home.
    I was in for a total of 6 days. But now I live with a underlying fear it will fire again. This is an experience I don,t care to have again. My device was put in to help me, believe me I never expected this to happen and hope it never does again.
    dennis
    Tags: None
  • #2
    Re: Icd Missfire

    Dennis,

    What you went through sounds friggin' awful! I certainly hope they got everything straightened out for you and it never happens again. Yikes! I remember there was a post here not too long ago... I forgot now what the name of the thread was or who posted it... but this person had their ICD misfire something like 30 times in one day. That'd be enough to send me off twitching to the looney bin. Let us know how things turn out.

    Take care,

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

    Comment

    • #3
      Re: Icd Missfire

      Hi Dennis
      I have had my ICD since November 2000. I was in the hospital to undergo a second myectomy when the doctors approached me to have the ICD implanted. It took quite a few doctors and medical personnel many visits and their point of view (which was go for it) before I allow the implant. Prior to the implant, I was very active. I worked a full time job (8 hrs.), some nights I worked at a different job for 3 hrs. and I worked on the weekends for 4-5 hrs., and did all my own housework (scrubbing my floors on my hands and knees, etc.) I exercised every night, faithfully. NOW...I work an 8 hr. job, do my housework (no more scrubbing my floors on my knees) and I DO NOT exercise. I basically am afraid to be alone. I too have my ICD interrogated every 3 months. My ICD has never fired, but I have the fear that it will. It is controlling my life, something I never thought would happen. I was a very independent woman, but the thought of this device controlling me makes me angry, but the fear is so overwhelming. I can only imagine how you feel now since you have experienced it firing multiple times.
      Unfortunately, I have no advice for you because I am basically in the same boat as you.
      I'm sure others will give you their point of view on this subject.
      Take care
      Esther

      Comment

      • #4
        Re: Icd Missfire

        ICD's are not simple devices and I think sometimes we take them for granted when they sit quitely and offer protection. They are not without risk and they are "MAN MADE" - man is a very faulty animal and therefor so are items he/she can make. We have this amazing technology and it has saved many many lives, some you know here on the board. We know we have to LIVE with these devices - in good times and bad. The good news is the overwhelming majority of these devices works well - and if there should be a problem they can be corrected in nearly all cases.

        I had an ICD go bad in 2001 - went in for my ICD check and zero -zip- nada - nothing showed up - the device was stone cold dead. Always nice to know the device was sitting in there doing NOTHING while I was walking around Disney World with my family! I was admitted into the hospital - do not pass go do not collect $200 - stuck in the hospital (on Passover -my In-laws LOVED THAT!) The next morning I had a new device and all was well - now that battery is on its way out and October will lead me to a new device again.

        No, I have never had an inappropriate shock and I know it is hellish to go through but I can not say "I know first hand". My heart goes out to those of you who have had this happen.

        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)

        Comment

        • #5
          Re: Icd Missfire

          Dennis,

          I read your letter from July, 2004 and even though quite a bit of time has past I wanted to respond. I am a 34 year old female and I too have a defibrilator/pacemaker. Mine was just put in Feb. of 2004. Only two weeks after it was implanted it fired 13 times with in a 5 minute period. Thank the Lord I was not having dangerous heart rythems. My heart rate got to high due to running late for an appointment, being nervous and walking at a fast pace. Most likely, because the first shock scared the tar out of me, my heart rate continued to beat too fast. After 13 shocks some wonderful people helped to calm me down and the shocks stopped. Of course during this whole eposode I thought something horrible was happening to my heart. It wasn't till later at the hospital that I find out they had to make some adjustments to the device and put me on Toprol and things have been much better since. But the fear of being shocked again is always there. I can totally relate to your experienc. I am taking paxel to help calm me and I believe that and time has helped my fears not be so strong. I could go on and on about this but I won't. I truley hope time has helped you also. The implant is suppose to be there to save our lives. It's up to us to live our life the the fullest.

          Please take care and God bless!!

          Cheri

          Comment

          Previous template Next
          Working...
          X