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New device for me~

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Lisa Salberg Find out more about Lisa Salberg
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  • New device for me~

    October 19, 2004 I will be getting a new ICD - the old one has run low on battery.

    The fun of living with technology!

    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)

  • #2
    Re: New device for me~

    Lisa

    What kind are they giving you this time around, my son just recieved a ST. Judes and it zapped him Friday night...i'm sure it had nothing to do with the unit

    I haven't been able to get ahold of him since but i'm sure he is ok ....bad news travels fast

    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

    Comment


    • #3
      Re: New device for me~

      Good luck, Lisa.

      Shirley, I'm sorry. I hope that he's ok. Thank goodness he had it.

      Reenie
      Reenie

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

      Comment


      • #4
        Re: New device for me~

        Hey Lisa,
        I heard they now have a model that does not need a battery. It’s a wind up model – and it chimes every hour on the hour.

        Seriously though, how long do you expect to be out of the office? Do you have any idea? You know we all feel like lost little lambs when you’re not there. Maybe they could install a zipper so that they could change units during an office visit. In the future. Doesn’t that sound like a good idea?
        Burt

        Comment


        • #5
          Re: New device for me~

          Now for the rest of the story...

          My EP works with a cardiac surgeon to do ICD's. Today I met with the surgeon. It was the best appointment I have had with a "non HCM specialist" in years! This man attended our meeting in NJ last June - at which time he thought - I guess I should really take a moment to look at my own family history. It was alway known that his wifes family had a lot of early sudden deaths and that HCM was likely the cause...but he really got the message at our meeting. Last week a family member was implanted with an ICD!

          Other family members have been screened and are in the midst of the process. One family member has a history of "asthma"... I was THRILLED when he said to me "I remembered what you said about all the cases of HCM that are missed be becaused it was thought to be asthma" I have to tell you that made my day! Not that his family member may have HCM, not that he may have asthma - but that the thought was connected - "Asthma" may be HCM.

          It was a good day -

          Take care - and thank you for all your kind words - Oh I will be sticking with Medtronic - it has done me well so far.
          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


          • #6
            Re: New device for me~

            Hi Lisa,

            I hope all goes well with your new device. I had mine tested today and all went well except still in A-Fib...Dr. was hoping I would be cardioverted.

            In fact the nurse almost didn't let me leave because of the A-fib. I guess when I see the dr. friday, he will tell me to go to NEMC I am sure. It has already been suggested like I said before. Now he is scratching his head.

            Well keep us updated on you. Hope all goes well.

            Comment


            • #7
              Re: New device for me~

              Lisa,
              Good luck and hope all goes well . You will be in my thoughts and prayers for a speedy recovery. .
              Pam
              Dx @ 47 with HOCM & HF:11/00
              Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
              Lead failure,replaced 12/06.
              SF lead recall:07,extracted leads and new device 2012
              [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
              Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
              Genetic mutation 4/09, mother(d), brother, son, gene+
              Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

              Comment


              • #8
                Re: New device for me~

                Dear Lissa!

                My best wishes for you!
                Hope soon you will feel like a new battery!!
                Wishes for healh, peace and love!

                Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
                Haifa - Israel.

                Comment


                • #9
                  Re: New device for me~

                  Hi Lisa -

                  Happy thoughts are with you...

                  Neat little story about the surgeon.

                  SheliRenee
                  Mom of Keanu
                  4 years old (will be in March)
                  Dx at 2 days old with Biventricular hypertrophy
                  Dx at 6 weeks with HOCM
                  Dx at 5 months with V-tach
                  Dx at 3 with Noonan Syndrome

                  Comment


                  • #10
                    Re: New device for me~

                    I haven't stopped in here in a while, so I am late with responses!

                    Good luck with your replacement Lisa! Andrew is due any time to have his replaced also. His is so low now they want it checked once a month, so at his last appointment they set us up with a Medtronic CareLink Monitor! With this his ICD can be checked from anywhere through a the phone line! I hook him up to it, (and the other end to a phone jack) and it interrogates the ICD exactly as it would at the clinic, then sends the info to a computer in the clinic.

                    Pretty cool!

                    Again, good luck!
                    Dolly~
                    mom to Andrew(HCM) 21 years old
                    Diagnosed \'95 age 5
                    Myectomy \'96 age 6
                    ICD implant \'99 age 9
                    First ICD shock (X2) \'04
                    ICD replacement surgery \'05 age 15

                    *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

                    Comment


                    • #11
                      Re: New device for me~

                      Dear Dolly!

                      I am always thinking about you!!!
                      And andrew!!
                      Is it his picture attached? He looks so big!!
                      This phone tech. sounds a great option!
                      I will wait for good news after the replacement!
                      Best wishes!!!
                      Wishes for healh, peace and love!

                      Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
                      Haifa - Israel.

                      Comment


                      • #12
                        Re: New device for me~

                        Good luck, hope all goes well

                        I have extra percocet that I can send to you if you need it

                        Comment


                        • #13
                          Re: New device for me~

                          Lisa, Thinking about you, lots of prayers coming your way for an uneventful replacement of ICD tomorrow and a speedy, uncomplicated recovery! Let's have you in tip-top shape for the next big excursion! Lots of hugs for you and Becca - oh, and tell Adam not to clap too many times, maybe the next battery will last longer. Lots of love, Linda

                          Comment


                          • #14
                            Re: New device for me~

                            Ok Linda brought it up so I will tell you all about my loving, caring and smartas$ of a husband...
                            In 1992 I received my first device - a pacemaker - As you can imagine Adam and I were a little worried about the entire thing. However we have had a way of dealing with stress..LAUGHTER... so if you all recall the early 1990's and the "clapper" commercials... Well picture this - I come out of the OR and I see Adam at which point he claps twice, looks at the doctor and said "I dont think it is working she is still awake!"
                            At that point I laughed..it hurt - I hit him and that started my life with an implantable device!

                            So that was my 1st device.... in 12 hours I will hit #4 I have to say honestly I really see this as no big deal... I just hate the IV thing.

                            Thanks for all your good wishes - I hope to be home and online by 6pm.

                            Talk to you all soon...all charged up
                            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: New device for me~

                              Lisa

                              Good Luck, I know things will be fine and don't worry about us we will still be here ok, you rest and don't do too much ok

                              Shirley
                              Diagnosed 2003
                              Myectomy 2-23-2004
                              Husband: Ken
                              Son: John diagnosed 2004
                              Daughter: Janet (free of HCM)

                              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                              Comment

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