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[b]Christmas Eve[/b]

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GaryV Find out more about GaryV
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  • [b]Christmas Eve[/b]

    Happy Holidays to all.............I was out shopping the day of Christmas eve, I came out of one store and was walking towards another. I felt my heart get out of rhythim, like a quiver and race into v tach. what seemed like an eternity was a matter of a few seconds but it fired. As in the past I felt ok after the shock, but at the same time upset. Upset because this is the third time it has fired since mid august. Now to some that may not seem to bad but for me it is. I am going to see the electrophysiologist next week and maybe he will have some sort of answer. but I want to know why all of a sudden it has been firing like this after about a year and a half of no firing.........I am open to suggestions.
    Gary

  • #2
    Re: Christmas Eve

    Hi Gary,

    I'm an EP/ICD nurse (don't have HCM).

    That concerns me that you've had 3 shocks in 6 months. Were you seen by your EP after each of the other 2? Wondering because usually after a shock, we request that you come in and get interrogated, not emergently, of course unless you have more than one shock with an episode or experience problems recovering from the episode.

    If you were interrogated, were the shocks appropriate, ie for VT or VF? Because if you've gone for a year and a half zap free and now this...

    After you respond, I'll go from there with your answers to see if we can help figure this out.

    Regards,
    Laurie

    Comment


    • #3
      Re: Christmas Eve

      Hi Laurie,
      Glad to hear from you. I was interrogated after each fire and yes they were appropriate shocks..........VT. I just need to know is this something that is going to keep happening. I know that is part of having hcm but this has been a bit much. It's not like I am over doing it or anything. But that would be great if you could find anything out.
      thanks.............Gary

      Comment


      • #4
        Re: Christmas Eve

        Gary, I have no answers but I'm so glad you had that little box so that you're still here with us!

        Reenie
        Reenie

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

        Comment


        • #5
          Re: Christmas Eve

          Hey Gary,

          I had a big long response, then lost it when i was in review mode. So to quickly recap:

          First I'm not an Hcm specialist, in fact, I know very little about HCM. My expertise is in EP/ICDs. Secondly I'm not promising that I can figure out what's going on with you over the internet. My goal is to help give you and help you gather information to take back to your EP appointment next week. With that said, I have a list of questions to ask, if you don't mind:

          1. are you currently on an antiarrhythmic medication to suppress your VT? if so, what is it and what's the dose?
          2. when you had the other 2 zaps, if you were on medication, did your EP make any changes at that time, if so, what? or did he change your ICD settings?
          3. What's your underlying heart rhythm? Is it normal or do you have bouts of atrial fibrillation? and or are you paced 100% of the time (sometimes that's done for HCM so that the AV Delay can be shortened, which is supposed to help relieve left outflow tract obstruction.
          4. What type of device and model # do you have?
          5. do you know what your VT/VF cut off rates are and are you set for antitachycardia (ATP) pacing? Have you had ATP therapy that you know of?
          6. Obviously you don't pass out with your VT? Did you ever or was your device implanted prophylactically for your HCM?

          I'm tracking responses to this thread, so I'll try to get back with you promptly.

          Happy New Year!
          Laurie

          Comment


          • #6
            Re: Christmas Eve

            Gary,
            Well... I know your not really happy that the device fired..again...HOWEVER I do think it is better than if you did not have the device!
            Laurie has some good questions above. My first question would be what meds are you on now? It may be time to adjust those meds a bit. While it is great that the ICD is "working" I think you would be happier if it did not work so much.
            Also...when was the last time you had an HCM specialist look at 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)

            Comment


            • #7
              Re: Christmas Eve

              Hi Lisa,
              I think I agree with you for the most part about the meds and Laurie had some great questions for me to check up on when I go see my EP on tuesday the 6th. I should set up another appointment with Dr. Sherrid. What I really want to do is go out and actually get an appointment with Dr. Maron. I think that I might have gotten to that point, and to get the worlds expert advice and care definetly can't hurt......... What do you think about that idea and how would I go about setting something up????
              thanks.............Gary

              Comment


              • #8
                Re: Christmas Eve

                I think it is time to look at the WHOLE picture... and if that means seeking out some new advise it really can not hurt.
                I would check in with Dr. Sherrid first and see what light he can shed on this ... I would ask him about speaking to Dr. Maron and see if they can put their heads together to help 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)

                Comment


                • #9
                  Re: Christmas Eve

                  Well it's been a while since I have been here but alot has been going on in my life. I saw my EP a couple of weeks ago and he said the 2 of the shocks were from an arrythmia in the top chamber and he said that it is easily fixable.........I can't fully remember at this time what he said but he want to do a cath so he can make sure it is what he thinks it is and then he will basically cut the nerve that sends the signal for the arrythmia. It will stop that type of arrythmia so inturn my ICD won't fire for that reason anymore. He doesn't feel it is necessary to up the meds if this will solve the problem..........what do you think?????...........Gary

                  Comment


                  • #10
                    Re: Christmas Eve

                    Gary, I think you're talking abou radio frequency ablation. They use a radio frequency to ablate, or burn, the extra pathway. I had this done but I don't have HCM. I'm not saying it can't be done when you have HCM, but it isn't a standard practice. Just make sure your specialist is on board with this decision. It might work for you. Keep us posted.

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Re: Christmas Eve

                      Thanks Renee I have to set up an appt. to see him after I come back from my vacation. thanks for the help

                      Comment


                      • #12
                        Re: Christmas Eve

                        i think reenie is right in saying he (your doctor) is talking about radio frequency ablation to stop the arrhythmias.

                        you really, really, really need to have your specialist evaluate if you are a candidate for an RFA as only certain types of arrthythmias respond to it. my cousin was just told that an RFA would fix him up despite not being a good candidate from what _I_ know about them and the procedure failed and they are talking about doing it again. YUCK!

                        the problem is that an HCM heart is not a normal heart and while RFAs are usually "cures" for normal hearts with certain arrhythmias, it much harder to fix arrthythmias in us.

                        take care,

                        s

                        Comment


                        • #13
                          Re: Christmas Eve

                          Thanks Sarah.........I need all the info I can get so when I go see the specialist I know what to ask.......Thanks for the info




                          Gary

                          Comment


                          • #14
                            Re: Christmas Eve

                            Gary -
                            give me a call - I will be in the office on Tuesday - I think a specialist at this point is a good idea... getting to the one that will best meet YOUR needs is what we need to figure out.
                            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


                            • #15
                              Re: Christmas Eve

                              Hello Lisa, I agree with you about the specialist I was away for 8 days in Mexico and got back late last night so I just got your message. I would love to talk to you about this in more depth. while I was away my ICD fired twice! a little upsetting to say the least but from what I could tell it was not v-tach it was the other type of arrythmia that has been causing it to fire. It is a strange feeeling and it comes on real fast I get short of breath a little dizzy and the it fires.............this has to be taken care of now... it just doesn't feel right and needs to be corrected. I will try to call you, or you can call me at home I should be home the rest of this week......thanks for your help..........Gary

                              Comment

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