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.

My first device check-up

Collapse

About the Author

Collapse

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

  • My first device check-up

    I also posted this in the General Forum, so this is a double post if you've already read it there. I just wasn't sure if some members only read this board and others that one or like me, both.


    I saw my dr. on Wed. for the first time since Nov. They downloaded my PCD, and said I had had no episodes of a-fib and very few PAC's, PVC's, or SVT, which I was having a lot of before the implant and the change of meds, from Nadolol to Sotalol. So, I was a happy camper! He also told me I could come off my coumadin since I had had no more a-fib, and that I could tell if I was having it again and to get to the ER for blood thinner injections and to get started back on the coumadin. I'm praying that doesn't happen, but I'll deal with it if it does. For now, I'm so happy to be feeling back to normal! You don't realize how "normal" you feel until something like that happens! I don't have to go back for 6 mos. if I continue to do good! The oddest thing for me was my x-ray. That was the 1st one since my implant and it's weird to see that thing in there. I mean I know it's there, but it was kind of a shock to see it in there and see the leads. You could even see the writing on the device! Well, I hope everyone is doing well!

    Heather, 30-HCM, PCD implanted 11-02
    Heather, 43, non-obstructive HCM, dx'd at age 14, AICD implanted 11-02, PVAI ablation done for a-fib and a-flutter 5-2010. 2nd PVAI done for a-flutter and a-tach 3-2014. 3rd PVAI for a-flutter June 2015, dr forgot to reset ICD settings and I went into vt and almost died, July 2015, July 2015-started tx work up, October 2015, put on list in Dallas and tx'd on November 14, 2015.

  • #2
    I know what you mean...I have a copy of my xray after my ICD and it looks so odd to see the wires and box there!
    I am glad all is going well!!!
    Take care
    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


    • #3
      Heather,

      So glad you're doing great. Thanks for the update.

      Reenie
      Reenie

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

      Comment


      • #4
        OK, here is a question. How do they know you had few PVCs, PACs, and SVT. I thought the device is only programmed to recognize VT and, in your case, A Fib since you have one that is also a A Fib defibrillator.

        I was told that the device only records when it senses a dangerous rhythm. My device isn't programmed to shock me unless my HR is 200 bpm. Also, it has a charge time, right, so a PVC or 2 won't set it off. So here's the question. I thought that it will only record when it recognizes something dangerous....not just an errant beat here or there.

        Any one?
        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
          cynaburst,
          they can set the newer ones (mine was put in,in 8/98) to monitor and record at what ever bpm they desire . mine is now set to give therapy at 200 bpm v-tach but monitors anything over 150 or below 44. these things are amazing at what they can set them to do, its all about getting someone who can get the settings right!! :P hope this helped
          Rich
          Allways remember you cannot control the wind!!
          However you can adjust your sails!!

          Comment


          • #6
            Hmm. Interesting. I just got mine 2 weeks ago. I wasn't aware that it had that recording capability. I will have to investigate further. I have a Medronic Marquis DR, which I am told is the latest in dual chamber devices. I will have to check it out.

            I had it interrogated at my one week follow up. All they told me was that I was being paced 50% of the time, and that I had no activity. I will have to investigate what that meant.
            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


            • #7
              yea I have an older medtronics than yours so I know the DR will do everything mine will and more so its just about how they set it up
              Rich
              Allways remember you cannot control the wind!!
              However you can adjust your sails!!

              Comment


              • #8
                Rich,

                Do you know where on the print out this info. would show up?

                I got a copy of my settings, but I can't figure this out. I also wonder if there is a place that explains what the device will do. The info. that comes with the ICD is very scanty and seems very basic. I didn't do much better on MedtrOnic's website. Any ideas?
                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


                • #9
                  well I dont get my readouts,but its under the monitor area and I would call your EP's office and ask them or the medtronics rep where it is and how to read it .there are differnt menus and choices they can make depending on what they want to do and if you had no events recorded then tyhey wouldnt go into that area for the print out. I just went and got my id card and I have a Gem DR . so I think yours will do it to. but the more I know about this thing the more amazed I am . but the therapy its like a double edge sword , your glad its there and if you need it your glad it fired , but its not a pleasent experience . but i am getting used to it mine has fired 6 times since sept 2002. dpes a nurse at your Ep's office read yours or is it a medtronics rep ? if its a medtronics rep if you can get them to talk about it let them brag a little bit and they will tell everything you want to know, atleast thats how I do it lol good luck
                  Rich
                  Allways remember you cannot control the wind!!
                  However you can adjust your sails!!

                  Comment


                  • #10
                    A nurse at my EP's office reads the print out. I have not yet met a Medtronic rep.
                    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


                    • #11
                      I'm kinda curious about this. While I was in the hospital with my gallbladder ordeal they were tweaking my heart meds. Anyhow my heart rate was dropping pretty low high 40's-50's. At one point the nurse came in because the monitor I was on said I had v-tach so she watched it a little and said she had seen "pacer spikes" on my EKG. I know my ICD is set to kick in if I drop below 50. The cardiologist on call called in a Guidant rep to check it and she said it had done nothing.

                      I guess I should trust the machine but I had seen the spikes as well. Since I am an EMT and very curious she showed me how to find them. Is this something I should be concerned about?

                      Mary S.

                      Comment


                      • #12
                        Hi. I'm not sure how the device decides what to record, but I know that my husband's does tell how many pvc's. He also had an episode that he was sure it had fired, such a strong palpitation it was, but the device hadn't recorded a thing. I wish I understood it more.

                        Reenie
                        Reenie

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

                        Comment


                        • #13
                          Hey Heather,

                          Glad your visit went well! Jamie goes on Wednesday to have her ICD interrogated for the first time. I agree with you.........it's odd looking at that xray for the first time, seeing the box and wiring inside your body!!

                          Hi Cynthia,

                          These devices store tremendous historys. They will record v tach along with other arrhythmias. I would think your ICD would record every beat that wasn't normal. It's almost like wearing an event recorder 24/7 to document an arrhythmia. If you feel something odd on a certain day at a certain time - tell your EP person and they can usually see that day on the history.

                          Take care ladies. Stay well.

                          Karen

                          Comment


                          • #14
                            Karen,

                            I asked my former EP doctor whether the device was like a holter monitor, and he said no. I also have felt arrythmias that the device didn't record. That's why I am curious about the subject. It doesn't seem to record every errant beat, and that's why I want to know what it does record.
                            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


                            • #15
                              Your device will only record what it is programmed to record...PVC's will not record and you may feel them often...Your device will record events that nearly make the device fire or which do make the device fire only...
                              A device called REVEAL will document all abnormal rythms...this is used for diagnostic purposes.
                              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

                              Working...
                              X