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NSVT- how worried and what can I do?

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carann1111 23 year old female with HCM SICD ( Subcutaneous ICD) implanted 04/17 family history of sudden death (mother) Grandfather (d), mother (d), aunt (d), and 2 cousins both HCM gene positive Find out more about carann1111
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  • NSVT- how worried and what can I do?

    Hi everyone!
    I’m 23, have non obstructive hcm and have an S-ICD. I struggle with PVCs and NSVT. My COE specialist who I trust very much told me that my NSVT episodes don’t alarm him too much and that he thinks my risk of these arrhythmias sustaining and becoming real VT and me getting shocked are very low. He told me if my quality of life is severely affected by these episodes (which it is) that he could put me on sotalol, but he said the side effects could be bad and that he would not want me on this drug if I want to be pregnant one day (which I do). So we decided against the sotalol and I’m just trying to get through it day by day but it’s very difficult as the episodes are terrifying and keeping me from every day activities. Has anyone dealt with the same thing ? If so how did you get used to it? I would love to get to the point I don’t have a panic attack every time I have an episode! Trying to cope with being “high risk” for sudden death due to NSVT, family history of sudden death, and a “bad” mutation is hard enough without these symptomatic episodes.

  • #2
    Hi Carann, I do not have personal experience with this but can only imagine how terrifying it is. You may want to share your experience on the HCMA Facebook group. There are a lot of active members and Lisa, the HCMA founder follows the Facebook group with many helpful comments. You might also set up a phone appointment with Lisa through the HCMA office. I am surprised if sotalol is the only choice of drug available to you.
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

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