Have you ever felt your ICD move?!

I was wondering if anyone has felt their ICD move. I was sleeping the other night on the couch, I have my left arm (my ICD is located on my left side) under my head and went up the side of the couch. I was suddenly awakened when I felt as if my ICD moved up. After inspecting it, it looks and feels like it did move. It hurt really bad at the time but now is only sore. I am wondering if it is still making its spot within all the muscles as I only had it implanted in June of 2008. Does anyone have any ideas as to what this could be?

Also, I am 23 and have only had my ICD a short time and still getting use to a whole new life style. I went into the E.R. one night for stitches because I passed out and split my chin open. Two days later I had the ICD implanted, they put the wire in the middle of my heart. Shortly after surgery the lead wire dislodged and I had to go back into surgery the next day. They tested my sister and found that she had borderline prolonged QT syndrome (my diagnosis was Prolonged QT, my QT interval was 647!) Her doctor wanted to run tests on me to verify a few things. He then told me that I in fact did not have Prolonged QT syndrome and therefore would not need the ICD. My original two E.P. doctors do not agree with this and have told me that it’s my decision. I have chosen to accept the diagnosis of Prolonged QT syndrome and leave the ICD in place. I find it frustrating that the evidence is there and doctors cannot agree. In addition to this diagnosis, the month before I was diagnosed with Celiac Disease which is gluten intolerance and has brought a whole new diet. It seems as if my life was completely turned upside down and inside out in a matter of one weekend! There is WAY more to my story but I have learned everyone has WAY more to their stories as well! I have loved reading everyone’s experiences, questions and comments. This outlet has really helped me accept this as a daily battle I will be coping with.

I am new to this group so any other support/advice you may have would be very welcomed! Thanks so much everyone’s support. I don’t think you may realize this but just knowing that there are other people out there with similar issues and dilemmas makes me feel more normal.

3 Comments

ICD movement

by kcruz - 2009-03-04 06:03:01

I have had mine move in the pocket as well, it feels really strange, if you are still tender and concerned i would call the docs office and talk with them.

Just saying hi

by Hot Heart - 2009-03-04 09:03:24

Not had any movement but seen ppl in here who have said that they have, including flipping, they dont seem to think its serious.

I'm still coming to terms with having a pm but it seems to be right what everyone says, in time you forget you have it, and, yes, youre right, we all have a story! lol

I saw an old guy in his 70's whose had a pm for donkeys years break dancing last saturday night, so dont adjust your life too much, we are paced, thats all, sorry about the gluten intolerance, but even with that theres a bright side, you will probably eat a much healthier diet over the years and be a fit and fab oap one day. Enjoy!!

Shifty ICD

by coalshovlr - 2009-03-12 10:03:38

Hey, rrentschler. I'm brand new to the group as well. I was diagnosed with Long QT Syndrome at the age of 16 and had my first ICD implanted at the age of 18. Now at the age of 24, my second device was just put in a week ago! With my first ICD I definitely felt it shift on numerous occasions, especially at night with the way I sleep. As Cabg Patch stated, it was because the doctor who implanted it chose not to suture it (and I'm not sure why). It seems hard to believe at first, but you really do get used it.

I'm no expert, but speaking from personal experience I know that it is extremely important to continue living life (as much as possible) just as you did before the Long QT/ICD came into play. I made the mistake of letting it overtake my sense of identity and ability as a young person, and wasted too many years thinking my life was permanently crippled by my diagnosis.

If you ever need anyone to share your story with or vent with I'm here!

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