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.

Received my first shock(s) on Father's Day - 13 times!

Collapse

About the Author

Collapse

Dolly W Find out more about Dolly W
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Received my first shock(s) on Father's Day - 13 times!

    Well, my ICD fired for the first (13) times on Father's Day. I had just showered and was brushing my teeth, when I saw this bright light and felt as if I had been shocked by electricity. Honestly, I didn't even realize it was my ICD. I was a little confused and trying to figure out what happened when it hit me the second time. I grabbed the phone and started to call 911 when it hit me the third time, and the phone flew across the room. I managed to contact them and all I could think about was I didn't want to be naked when the paramedics showed up - so I have EMS on speaker phone, while trying to get dressed, and getting 2 more shocks! They stopped briefly, and I actually was able to open the door, grab meds, keys, and cellphone before they started again. By the 7th shock, I was getting weak and had to sit down. I received 3 more shocks before the fire department arrived. When they walked in, they wanted to know who the patient was! When I informed them that I was, they told me I looked fine and my heart rate was normal, and wanted to know if I still wanted to go to the hospital. What do you think?

    Long story, short - the device recognized my t-wave as a second beat and thought my heart rate was actually doubled. It did what it was supposed to do - unfortunately, I didn't need it to! When Medtronic interrogated it, they told me that I actually received 13 shocks, but I only felt 10 - I didn't mind not feeling the other three! I have been reprogrammed, tested, and told that everything is working appropriately. I must admit, I'm a little paranoid at this point - any sudden noises or movements make me jump. Hopefully, that will end soon.

    On a positive note - all of my tests showed that my heart is functioning well - my ejection fraction is 65%, which is considered normal. There have been no changes according to the echo. My cholesterol is below 200, and all other labs were within normal limits. My troponin was elevated, but it was determined that this was due to the trauma of receiving so many shocks in a 15 minute time-frame.
    HOCM, Septal Myectomy 10/02 (Mayo Clinic), Medtronic ICD 10/07, TIA 10/07

  • #2
    Re: Received my first shock(s) on Father's Day - 13 times!

    Well, HELLO DOLLY !!!
    That is quite a story ! So glad you are doing well now and that it worked !

    Thank you for sharing !!
    take it easy !
    peace
    mariab

    Comment


    • #3
      Re: Received my first shock(s) on Father's Day - 13 times!

      Glad you survived & were able to tell us about it!
      Marc
      Diagnosed @ 48
      Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
      Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
      AICD - Valentines Day '08, Spark Plug replaced 11/14
      After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
      Quietly going insane . . .

      Comment


      • #4
        Re: Received my first shock(s) on Father's Day - 13 times!

        Dolly - Sorry to hear your story, but glad you are ok. Who are you seeing as your cardiologist and/or EP there?
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

        Comment


        • #5
          Re: Received my first shock(s) on Father's Day - 13 times!

          Thanks all. I have to admit - I thought I was going to meet Jesus Sunday - but mom always told me, "You can't kill bad grass" - LOL!

          Cynaburst, I was seeing Dr's. Duggan and Snyder at East Jefferson, but had to switch to the University/Charity system due to loss of job/insurance. Surprisingly, I received exceptional care during my hospitalization. I was admitted under the care of Dr. McKinney from Tulane Hospital. He is one of the better known specialists in the New Orleans area. However, I notice lately that physicians are becoming more knowledgable about HCM.

          Thanks Lisa and HCMA for all you do to educate us and the health care professionals who treat us!
          HOCM, Septal Myectomy 10/02 (Mayo Clinic), Medtronic ICD 10/07, TIA 10/07

          Comment


          • #6
            Re: Received my first shock(s) on Father's Day - 13 times!

            Hi Dolly,

            I have been getting ventrular etobic beats and the are suggesting that I get a ICD, I am really nervous about it, then reading your story made me even more scared. Could you tell me about your experience, getting the iCD and why you had to get it? How do I make a post? I am kinda of new at using this site.

            Sonya
            Sonya
            HCM- Diagnosed at age 27
            ICD - Implanted Feb 9, 2012

            Comment


            • #7
              Re: Received my first shock(s) on Father's Day - 13 times!

              Holy @#$%! That's quite a story. Thank you for sharing this. The one time I got shocked, I was out cold so I didn't feel it. I've heard reports that it can feel like you're being kicked by a horse. Not something I yearn to experience while conscious.
              Diagnosed at age 14 with HCM; ICD Implant at age 24 (first shock less than one year later); Take Verapamil (360mg/daily) and Toprol (50mg/daily)

              Comment


              • #8
                Re: Received my first shock(s) on Father's Day - 13 times!

                So glad you're OK now. What an experience, thanks for sharing and hoping you have no more repeat performances!
                Dedee
                Diagnosed at age 31 with HOCM (IHSS at the time)-Guidant ICD implanted 6/13/2003-recalled/replaced January 2008 with Boston Scientific ICD-Myectomy Tuft's Boston 6/15/2009 age 63-Genetic mutation found-mother of two-Amy (age 38) has gene present-ICD implanted at Tuft's 7/13/2009-Amy has 2 children , Holly (10), Danielle (8), not gene tested yet-My other child is Randi (age 33) gene not present-my father died at age 42 and my brother died at age 31 both from HOCM.

                Comment


                • #9
                  Re: Received my first shock(s) on Father's Day - 13 times!

                  WOW !

                  Holy Toledo, that's a lot of shocks!!
                  I am so glad you are okay.



                  I had just one inappropriate shock from my old device due to a noisy lead and I thought that was rough. The shock knocked me to the floor.

                  What happened was one of my leads was registering my heart rate above 188 bpm due to what they called "noise". The device was charging up to shock everyday for about a month before it finally did shock me.

                  Man, I wish I still had the magnet the EP doctor gave me. He gave it to me in the interim while I was waiting for surgery for the new ICD. It was a St. Jude (that's the ICD I have) magnet, he told me to put it over the device if I was to get multiple shocks. I was supposed to give it back after they put in the new ICD, but I kept it -- but then I lost it when my townhouse had black mold and I left so much of my belongings behind.

                  If I ever see a magnet at the EP office, I'm gonna take it.


                  By the way, I think you have an amazing attitude Dolly



                  Hugs,
                  Eve
                  Last edited by Eileen2345; 07-25-2009, 05:33 PM.
                  49 yrs. old
                  Diagnosed at 31.
                  Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                  First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                  Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                  Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                  My brother passed away suddenly at 34 yrs old from HCM.
                  2 teenage children, ages 17 and 15.

                  Comment


                  • #10
                    Re: Received my first shock(s) on Father's Day - 13 times!

                    Dolly -

                    I am so sorry to hear what happened to you. I had a similar experience with my Medtronic device double counting due to my higher than normal t-wave. I took 6 shocks before it stopped.

                    I neglected to fully "deal" with my emotions after this happened. I think I had PTS disorder from the experience and maybe some depression. For weeks after the incident I would sometimes "re-experience it" while drifting off to sleep. Please get support if you need it.

                    Comment


                    • #11
                      Re: Received my first shock(s) on Father's Day - 13 times!

                      My defib went off 10 times, inappropriately and I too had PTSD from it. My EP told me the episodes I felt while falling asleep were called phantom shocks. Which makes since it you think about it. I think he said it had something to do with the bodies recall.
                      Shelly
                      *****
                      Choose to laugh instead of cry...it's prettier!
                      Remember...
                      You always have the option to change.

                      Diagnosed 1994 with no family history
                      AICD 10/06
                      Mayo Clinic Myectomy 11/07 Joe Dearani

                      Comment


                      • #12
                        Re: Received my first shock(s) on Father's Day - 13 times!

                        Apologies for waking up an old thread but I am experiencing the same thing and thought I was going crazy! After a 17 shock day, I "felt" a jerk in my body falling asleep for a few nights. Glad I found this thread!

                        Comment

                        Working...
                        X