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A defibrilator for me

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Boz Find out more about Boz
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  • A defibrilator for me

    I had my first appointment at the HCM Clinic in Boston this past Friday and, as expected, heard that a defibrillator implant was recommended. Dr. Link will be providing the service which is currently scheduled for next week.

    Dr. Link has mentioned that a right side implant was possible, as I am left handed and still hope to pitch during the play-offs for the Red Sox. I’m wondering if anyone has opted for this “twist” and if so, are there any draw-backs? Maybe I’m wrong, but it seems that the leads would have to be longer and would be subjected to more tugging and stress – especially when I’m throwing a curve ball.

    During the consult with Dr. Udeslson, I also learned that it is not at all unusual for an individual to present with Hypertrophic Cardiomyopathy without family history. To be honest, I was beginning to wonder about this diagnosis. Nearly all those posting to the boards here refer to brothers, sisters, parents, etc who share the disease. In my case, there are 2 relatives who might be suspected (both on my mother’s side), but we’re going back 60 and 70 years to single them out. We’ll never be able to prove HCM one way or the other.

    And finally, all three Drs. agree; not only do I have this rare disease (HCM = 1:500), but this rare disease has progressed to an infrequently seen phase (end stage = maybe 5% of above) in my 50 year old heart. So what does that work out to 1 in 10,000?? The weird thing is, this gloomy sounding diagnosis bears no resemblance to how I am feeling. I actually feel quite good and for the most part am asymptomatic– knock on wood. I continue to work and recreate though I do become winded sooner than I did a year ago. I suppose the non-obstructive version has it’s benefits.
    • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
    • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
    • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
    • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
    • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
    • 2011: Brigham & Women’s - Medtronic ICD implant

  • #2
    Re: A defibrilator for me

    The right-sided implant is not a problem. I'm glad they are giving you the choice, willing to work with you. Some people have implants on both sides, pacer on one side and defib on the other. The combo device is still relatively new and was not available to some of these people when they got their devices. As for pulling on leads, the technique has improved with experience. It shouldn't be a problem. Children have implants and may double in height, still using the same leads. It was explained to me that the lead is sort of coiled and uncoils with growth. Like with any procedure, you want the best experience behind the person doing it. You are at a great facility. Just ask all your questions and feel comfortable with all the answers and info ahead of time. Best wishes - Linda

    Comment


    • #3
      Re: A defibrilator for me

      Glad to hear you have some answers and a path to follow.

      You are in good hands and I hope all goes well with your ICD!

      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


      • #4
        Re: A defibrilator for me

        Boz,
        Good luck to you with your implant. They will take good care of you. Of course you know I am a little prejudice and love them all at NEMC
        Best Wishes. 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


        • #5
          Re: A defibrilator for me

          I guess it’s no Quincy-dence that Boz is now in Boz-ton. He must really know where to go to get the very best of care.

          Good luck to you my friend. Ask them for the model that also tells time and gets radio stations. I hear they may include cell phones now too, but there’s no getting away from the monthly phone charges. (You’ll never guess where they put the antenna. - Wahoo.)

          Watch out for the models from South America though. I hear they pace to a rumba beat.
          Burt

          Comment


          • #6
            Re: A defibrilator for me

            Good luck, Boz.

            Reenie
            Reenie

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

            Comment


            • #7
              Re: A defibrilator for me

              Thanks all for the encouragement!

              Before finding this site and the great - 1st hand information, I never would have considered this step. In fact, I probably never would have switched Drs. and would still be in cloud of confusion!

              I go in first thing Monday for a TEE. A month ago they saw a clot in the left atrium. We expect it to be gone now, but if it isn't I guess the proceedure is off.

              Burt - my wife wants the model that comes with GPS capabilities - the one that tracks my every move.
              • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
              • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
              • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
              • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
              • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
              • 2011: Brigham & Women’s - Medtronic ICD implant

              Comment


              • #8
                Re: A defibrilator for me

                Hi Boz,

                My son Andrew has a right side implant. They decided on this since he is left handed and does almost everything with his left arm/shoulder.

                Andrew is a very dare-devil, no fear type kid and nothing he does surprises me anymore! Despite his recklessness he has never had any problems with his right side implant. He does have a deep tissue implant, which gives the box some extra protection from direct blows. The leads have never had any problems and it is now 5 years after original implant.

                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


                • #9
                  Re: A defibrilator for me

                  Boz,
                  Just a few weeks (about 3 or 4) after I had the ICD implant, I had a barium swallow (an xray of the upper digestive track). The radiologist was very interested in my results and wanted to show me everything. But frankly, I was only interested in watching those ICD leads snaking back and forth in my chest. What made them so fascinating was that they were really long and snaked back and forth so much that I could not see how I could possibly straighten them out and thus pull them out of my heart. So, I agree with all here. If they say they can implant them right side and that they will be long enough, trust them!

                  Rhoda

                  Comment


                  • #10
                    Re: A defibrilator for me

                    The transesophageal echocardiogram (aka TEE) showed last months clot stuck in the left atrial appendage has not disappeared. So we decided to postpone the whole shooting match until after Thanksgiving. Proceedure was to included starting me on sotalol, implanting the ICD and then using the new device to cardiovert. I've been in A-Fib since the end of July. The sotalol might help the cardioversion to stick this time.

                    No one, except my wife, seems too concerned about the fact that a clot is sitting in there, but there sure seems to be a shortage of volunteers willing to kick me into sinus rhythm in this state.

                    I am very interested in the right side implant - the only concern Dr. Link has is about being able to supply enough power across the longer leads.

                    Something I've been wondering about and haven't asked the DR yet . . . Does having an ICD implant complicate, or even rule out the possibility of having other heart proceedures in the future? For instance: what if - down the road - some one decided that a radio frequency ablation might fix my A-Fib (ala Tony Blair). Or - could these leads even interfere with a heart cath that might be needed?

                    Now unfortunatly, I'm going to have some time to think about all this.
                    • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                    • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                    • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                    • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                    • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                    • 2011: Brigham & Women’s - Medtronic ICD implant

                    Comment


                    • #11
                      Re: A defibrilator for me

                      Boz

                      I had open heart surgery with mine in and in August i had a heart cath and it is still working so i think you will be ok, i don't know about the Ablation end of it though maybe someone else does, i hope i help some, try to relax and take it easy

                      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


                      • #12
                        Re: A defibrilator for me

                        Boz,

                        Sorry to hear things are delayed for now for you. I hope the plan works out and you can then proceed.

                        As far as procedures go , Shirley is correct all things can be managed around the AICD. It is just turned off when interventions are performed . Only thing prohibited is an MRI and anything involving large magnets. Radio frequency ablations are OK too , I had a friend who had one w/ the devise.

                        It will be good w/ the AICD to cardiovert you. This works well to eliminate the small burn that occurs when they use the paddles. It took a few years for my doc to get it right when I would go into a-fib, when they would test my unit yearly. She kept asking me why I would go into a-fib everytime they tested my AICD. I thought it was funny that she would ask me. She finally found out that it was a timing thing. So far no paddles for almost a year.( Knock on wood).

                        You take care and don't drive yourself nuts thinking too much, sometimes you just got to ride these things out.

                        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


                        • #13
                          Re: A defibrilator for me

                          Hi Boz,
                          Listen, instead of an AICD I got a vibrator – and let me tell you, it works great fighting the effects of tension and stress. That is, if I can ever get it back from my wife. She used it on my back one day, and I haven’t seen it since.

                          I mentioned this before, but Jim poo poo’d the plan – and it works really great. That is bubble baths for two. One good long soak – deserves another.

                          I call them home remedies because, well, who would do it in the street? I mean, after all.

                          Hang in there buddy. You soon will be talking about it in retrospect.
                          Burt

                          Comment


                          • #14
                            Re: A defibrilator for me

                            You are not giving up the chance at a future procedure with the choice to get your ICD.

                            You can still try to ablate the pathways...AND have the device already there if the procedure alters your sinus node at all!

                            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: A defibrilator for me

                              Hey Boz-

                              Sorry I haven't posted earlier - I've been crazy here at work - has anyone heard that there's a Presidential Election coming up?? My county office is involved in all that good stuff.

                              Anyway, I just wanted to let you know that Alan and I are thinking of you and hope all is well. Will call or PM you soon.

                              Looking forward to seeing you up in Boston in early November.

                              Ange

                              Comment

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