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

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Lisa Salberg
Lisa Salberg
HCMA CEO and Founder
Find out more about Lisa Salberg
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    outlander
    Shy Heart

  • outlander
    replied
    Re: ICD

    Don't have one yet. Doc told me last week that I should have one. Waiting for the folks that install it to call and schedule an appointment.

    Leave a comment:

  • mandksiders
    Super Contributor

  • mandksiders
    replied
    Re: My primary reason for having an implantable defib. is...

    Hi Kushal,
    I have a Boston Scientific device as well. They "read" it weekly via a transmitter that I have next to my bed. It's hooked to my phone line. I do not have to do anything other than be within a few feet of the device for them to get a reading from it. It's wireless and reads it usually when I am asleep, every Tuesday morning. These reads are sent to Boston Scientific to look over and if they see anything out of the ordinary they contact Mayo. Four times a year Mayo receives a wireless read, with one of those being an in-office check of my device and a print out then as well of the past year. It is very low maintenance for me. Good luck to you.

    Leave a comment:

  • Kushal
    Junior Contributor

  • Kushal
    replied
    Re: My primary reason for having an implantable defib. is...

    Lisa and everyone else: This week on Wednesday (10/17/12) I had received an ICD/pacemaker for the first time in St David's Hospital in Austin, Texas. I was due for one for a long time now when I was advised almost a decade ago by Dr. Barry Maron in Minneapolis based on my septal thickness and ventricular atrophy making me fall in high risk category. I weighed out the pros and cons of implanting an ICD until now when I had a sudden death experience. Thanks to a UPS delivery guy who found me on the sidewalk and EMS service and all the support staff at the hospital and my family and friends that I feel grateful to have gotten a second chance to live. My ICD is from Boston Scientific. I was informed that they will check my battery power via phone line. Does anyone have experience in this? Thanks, Kushal

    Leave a comment:

  • Missy2436
    Shy Heart

  • Missy2436
    replied
    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!

    Leave a comment:

  • Stephaniewhite
    Contributor-in-Training

  • Stephaniewhite
    replied
    Re: My primary reason for having an implantable defib. is...

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

    Leave a comment:

  • Philipk02
    Ventricle

  • Philipk02
    replied
    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.

    Leave a comment:

  • Philipk02
    Ventricle

  • Philipk02
    replied
    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.

    Leave a comment:

  • Philipk02
    Ventricle

  • Philipk02
    replied
    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.

    Leave a comment:

  • Jamie
    Shy Heart

  • Jamie
    replied
    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.

    Leave a comment:

  • armstrong
    Junior Contributor

  • armstrong
    replied
    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

    Leave a comment:

  • shirleymahoney
    Brave Heart

  • shirleymahoney
    replied
    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

    Leave a comment:

  • Shayne
    Contributor-in-Training

  • Shayne
    replied
    Re: My primary reason for having an implantable defib. is...

    I was having unsustained Vtach.

    Leave a comment:

  • MariaB
    Major Contributor

  • MariaB
    replied
    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

    Leave a comment:

  • Linda
    Super Moderator

  • Linda
    replied
    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

    Leave a comment:

  • MariaB
    Major Contributor

  • MariaB
    replied
    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

    Leave a comment:

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