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My primary reason for having an implantable defib. is...

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Lisa Salberg Find out more about Lisa Salberg
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  • #31
    Re: My primary reason for having an implantable defib. is...

    Neenee,

    Then that is why you have it " as a safe guard "

    Like many of us , our AiCD's may have not fired , but they are a life saver and all it takes is one time. I understand that more and more are having them post myectomy.

    My recent experience is that when I needed it for a-fib; low rate, ( once they put a new working wire in) the pacer component of my AICD, worked to bring my heart rate back up to a safe range. There are many "safe guard" reasons for having an AICD.

    Glad you have the protection your doctor deemed necessary.

    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

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    • #32
      Re: My primary reason for having an implantable defib. is...

      Originally posted by Proximus View Post
      I ended up getting one because my mom had gone into cardiac arrest and her ICD saved her life, and my Cardiologist found some irregular beats on a 24 hour Holter Monitor. I'm VERY thankful I have one of these -- it's my "Cool Metal Box"
      My kids say I'm gonna live forever because I have a battery. It's funny.
      Diagnosed with HCM August 20, 2004
      Family history.. ask Shirley Mahoney
      ICD put in August 27, 2004
      Generator replaced November 24, 2008
      Two boys that are clear so far

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      • #33
        can you have a job with this device?

        most employeers wont hire someone with being a risk, rightn ow son has his gf on his case saying he is normal and he can work just because he LOOKS normal, his cardio says he can not wrk he has high r isk for sudden death and other reason with heart, complications . also when technology sets in some time in his future and govenorment make a rule peole with disabiltys work a few hours a day or week for their sanity and esteem reasons then we would be in a perfect world, but rightnow i see many jobs are limited, can any one give me insight on them in the working world with this device? and what your eployeer has to say. even though you already had teh job prior we know you still are entitled to ot, but my son had doors close on him untill we went to doc and he said it would behard for him to find a job with this device and disease. if he Had A JOB PRIOR TO ALL OF THIS, EMPLOYERR CAN NOT lay him off FOR IT.. SO ANY ONE GOT SOME INPUT?
        SON HAD HEART ATTACK 2 X SON DIED 1 BUT BROUGHT BACK, DEFIB GOES OFF OFTEN SON SIBLING PASSED AWAY sd IN 92. SON SLEEPS ALOT SON REACTS TO HOT AND COLD I CAN GO ON BUT THIS IS WHAT SOME OF HIS THINGS HE GOES THROUGH DAILY.. THATS HIS HISTORY

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        • #34
          Re: My primary reason for having an implantable defib. is...

          Hey Lisa !
          The first cardiologist I saw in Nov. was the one who diagnosed my HCM.. He suggested Catheder Ablation and in 10-15 yrs have an ICD. Since then, I have seen 3 other Docs.( None agree with each other) I do see Dr Lever on Wed.

          Im leaning towards an ICD. My Mom had SCD at 48 with no symptoms. She is the only history of SCD in the family. We have a huge family.
          She had an EKG done when she was 46 and it looks just like mine.
          Im looking at it as a safety. stinks, but its better than the alternative.

          Im wondering if a catheder ablation is a quick fix to a wacky EKG ?
          Thanks
          Maria

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          • #35
            Re: My primary reason for having an implantable defib. is...

            Maria - I'm glad you will be seeing Dr Lever soon. He will answer all your questions for you, but do call the HCMA office for more info and answers.

            As to a "quick fix", no, there really are no quick fixes with tried and true guarantees.

            Good luck with you appt Wed - Linda

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            • #36
              Re: My primary reason for having an implantable defib. is...

              Hello All
              I had my ICD put in Fri. and Cleve. Clinic. Went well, although I have a cold. Hurts to sneeze. More sore than I thought. Oh well.
              Im hoping they let me go to Cincy for testing in 5 weeks instead of the drive up North.
              Talk to you all later
              Maria
              Had implant for preventative

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              • #37
                Re: My primary reason for having an implantable defib. is...

                I was having unsustained Vtach.

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                • #38
                  Re: My primary reason for having an implantable defib. is...

                  I got my AICD because we have allot of sudden cardiac death from this disease most recent was my brother and neice

                  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

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                  • #39
                    Re: My primary reason for having an implantable defib. is...

                    Mine doesn't seem to fit into any of the main poll categories. My cardiologist writes:
                    Recommendation: I spoke to Joe and both of his parents regarding risks and benefits of ICD therapy. Joe's hypertrophy pattern has some similarities to that seen in a benign form of hypertrophic cardiomyopathy called apical hypertrophic cardiomyopathy. This type of hypertrophic cardiomyopathy is seen predominantly in Japanese individuals and presents at middle age. The hypertrophy is apical and the electrocardiogram shows deep lateral T wave inversion. However, Joe overall is very different in several ways, with a predominant feature being his early age at presentation. In addition the hypertrophy actually thins out a bit at the apex and it's mainly in the lower septum that he has the most significant hypertrophy. His echocardiogram has also demonstrated progressive and severe left atrial dilatation, which may reflect diastolic dysfunction. Finally, he has ischemia and angina on exertion. In order to make a decision regarding ICD implantation in Joe's situation a careful assessment of risk factors present for sudden death is needed. Joe's hypertrophy pattern is atypical and makes assessment of maximal wall thickness difficult. The pattern is more apical but does not fit the benign apical hypertrophy pattern. His second risk is exertional angina and ischemia in combination with very active life style. Another important factor is the lack of family history. Since Joe appears to be a spontaneous mutation, it is a complete unknown whether this is a benign or malignant mutation. The last factor is his severe atrial dilatation, which will predispose him to atrial fibrillation. In young adults with HCM, atrial fibrillation can have a rapid ventricular response, which may degenerate rapidly to a malignant ventricular arrhythmia. The risk of ICD implantation in Joe are fairly low acutely, but will accumulate over time due to the need for revisions and potential lead and device replacement. However after discussing it thoroughly with Joe and his parents, I believe that they are well informed and would likely proceed with ICD implantation for primary prevention of sudden death.

                    Which boils down to:
                    1. Hard to determine wall thickness due to atypical thickening pattern
                    2. Exertional angina and ischemia with active life style
                    3. Possibly malignant gene mutation
                    4. Severe atrial dilatation
                    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


                    • #40
                      Re: My primary reason for having an implantable defib. is...

                      I got mine due to the fact I had a 3.0+ septum and they did a Septal Alcohol Ablation which messes up the electric currents between chambers and was told I would have to have one for the rest of my life.
                      Sept 2000 - AICD Implanted.
                      Sept 2000 - 1st Alcohol Septal Ablation @ Scripps.
                      Enlarged part turned to mush.
                      April 2001 - Attempted 2nd Alcohol Ablation. Failed
                      April 2002 - Completion of 2nd Alcohol Ablation.
                      April 2002 - Blood Clot 1 week after surgery. Placed on Coumadin.
                      April 2003 - Bad reaction to Coumadin-4 Units Transfused & Vitamin K.
                      Sept 2004 & Dec 2009 - Replacement AICD Implanted.

                      Meds: Verapamil ER, Norpace, Lisinopril, Aldactone, Buspar, Celexa, Risperdal.

                      Comment


                      • #41
                        Re: My primary reason for having an implantable defib. is...

                        Lisa,

                        I don't have one yet. But, i am not sure should I. At the same time, my doctor in NY says its not bad enough for me to get it. And, on the other hand i have had to sudden deaths in my family history. You know my story.

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                        • #42
                          Re: My primary reason for having an implantable defib. is...

                          It turns out CCF says i should have one. And we scheduled. Jan 6, 2012 Meet with EP, Jan 9,2012 Implant, Jan 11 proposed discharge, doctor says it should be a two days stay since i am traveling. As we discussed, i will ask about pacing even though it won't work but you never know.

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                          • #43
                            Re: My primary reason for having an implantable defib. is...

                            I just got one and the CCF doctors wanted me to have it Also, I dont want to die. The thing has been also pacing since installed.

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                            • #44
                              Re: My primary reason for having an implantable defib. is...

                              Father died from carduac arrest and septum is over 3.0 cm thick.

                              Comment


                              • #45
                                Re: My primary reason for having an implantable defib. is...

                                Before I had my defibrillator implanted, and took Toprol, I had palpitations quite often, and would have trouble sleeping at night because I couldn't breathe that well. I did a stress test, echos, bloodwork during my stay in the hospital, and my Cardiologist said that the septum of my heart was larger than normal (I think around 2-3 cm?) I wasn't really paying attention at the time, so I'd have to get that info from my mom. I was still in shock from the news, so that's why I don't have much information on measurements and all that. Getting a defibrillator was suggested because of how young and active I am, and I had a run of V-tach while in the hospital, and also, there was a sudden death on my mom's side of the family (maybe her uncle). We don't know the cause of it. I'm going to assume it's most likely from HCM. The defibrillator is, I like to call it, my guardian angel!

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