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Low Risk but Recommended to get an ICD

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terrence85 Find out more about terrence85
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  • Low Risk but Recommended to get an ICD

    After some consultations, two echos, and a stress test, I was considered "low risk" at first. However, after doing a Cardiac MRI and wearing a heart monitor for two weeks (Zio Patch), UCLA recommended that I get a defibrillator implanted.

    Supposedly, they have a program to calculate percentage of getting SCA within the next 5 years, and I was at about 6%.

    Per my MRI test, they concluded I have widespread/excessive scarring. From my Zio Patch, they show I had a few series of ventricular tachycardia with the fastest interval lasting 4 beats with a max rate of 171 bpm. I'm not sure how reliable the Zio Patch is and how accurate the findings were, and also if my activity/stress levels at the time reflects this so I'm just uncertain if an ICD is necessary. I have an appointment with electrophysiology late this month to discuss further and consider my options should I proceed with it.

    In summary:
    1) No family history of HCM and/or SCA
    2) Ventricle thickness - 2.3 cm
    3) Widespread scarring
    4) Few tachycardia runs during my 2 week heart monitor
    5) Started on 50 mg metoprolol and have since increased my dosage to 75 mg and now to 100 mg. I was feeling symptoms daily to maybe once every 3 days when I was on 75 mg. As of yesterday, they upped my dosage so I can feel more "normal" and they said this may help with my scarring and arrhythmia?

    What would you guys do?
    Last edited by terrence85; 06-08-2017, 11:37 AM.

  • #2
    Hi Terrence,
    Here is the problem with percentages: 6% seems awfully low....unless you end up in that 6% and then it is too late. If it was a 6% chance of developing a non-lethal complication It might be worth the gamble OR if you were 81 years old instead of 31 years old I could see thinking twice about it....You asked what "You guys would do?"
    I am a retired ICU nurse, I am 68 years old and plan to live another 20 years. If I had extensive scarring and V-tach on my hoelter monitor or Zio patch, I would get the ICD.
    Your doctor's were spot on in recommending it for you.
    Also, The Metoprolol may help with your arrhythmia, but scarring is scarring it won't go away, it just may not increase as rapidly as it did before.
    The ICD should be an informed personal choice....gather all the information you need and a set of questions for the EP Cardiologist so you feel absolutely good with whatever decision you make.
    Last edited by JillC; 06-07-2017, 09:30 PM.
    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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    • #3
      Thanks Jill for your insight. I always knew getting an ICD was a possibility but didn't think it'd come down to this especially if I've been feeling great the past few weeks and was really positive before getting my MRI/heart monitor done. I have a few weeks to do this whole level of research before meeting the EP cardiologist. It sucks and, yes, I hate percentages too =(

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      • #4
        The thing about the risk of cardiac arrest is that it is totally unrelated to how you feel.....Think of it as a hereditary electrical glitch....You need a back up generator because the outages are totally unpredictable. I think that there may be a forum somewhere on line just for people with ICDs. I'm not sure.There are other cardiac electrical issues besides HCM that cause people to need an ICD. This forum is a bit quiet but if you are a Facebook user there is an HCMA Facebook group you can join and there may be some more input for 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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        • #5
          Yep, just found out earlier this week about the FB group. I was just accepted last night and I spent a good amount of time on there but a lot of the topics are random and/or unrelated to my experiences. Maybe there's a search function within the FB group that I can use?

          This forum has helped since I'm able to search directly for what I need and have helpful people like you respond directly =) Wish it was a bit less quiet though.

          Will keep that in mind regarding feelings and cardiac arrest being unrelated to cause/effect.

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          • #6
            I am not a facebook user so I am not sure how "searching" would work there. FYI.... I just googled "Support group for people with ICDs" and got several sites that may be helpful to you...especially with your very specific issue right now of contemplating an ICD placement.
            RE: Feeling great, do I really need an ICD?... Let me tell you a true story that my cardiologist told me. And it is not necessarily unique. A 35 year old woman asymptomatic, not ever diagnosed with a heart condition. She is in the kitchen washing dishes and her husband hears a thud. Husband goes to see what is happening and she is on the floor in cardiac arrest. He calls 911 does CPR the ambulance and paramedics defibrillate her and take her to the hospital. There she undergoes testing and is found to have HCM and she gets an ICD before she leaves the hospital. It is the same with some of the young athletes you have heard about...healthy, never knew they had a risk and then boom. Consider it a GIFT that you were diagnosed and can know your risk factors....others have not had that chance.
            I'll shut up now....LOL....I wish this Forum had more contributors too. It was very active before the facebook Group was started. It was one of the moderators on this forum that convinced me to go to Mayo and get a second opinion when my first myectomy failed. So I often feel a duty to check in once a day or so to see if I can be of assistance to anyone.
            Another blog/website that I really like is HCMbeat.com...The woman who runs it has an ICD and has had a myectomy. She screens and posts the very latest research on HCM.
            Have a great weekend!
            Last edited by JillC; 06-10-2017, 11:32 AM.
            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

            Comment


            • #7
              Hi Terrence,

              Been gone from here along time myself. Had ICD implanted Mar 2010, same situation sorta, low risk. As my Doc put it during testing and consult. It will probably never be needed, but if it is with your condition , it's guardian angel. If heart stops and no defib machine close by, doesn't matter how much cpr they do, without shock probably done.

              The surgery was a piece of cake, just had to stay in hospital for a few days after, which is boring as heck.

              I listened to my Dr. and took his advise. It ended my career talking to airplanes, but I was real close to retirement and made it.

              I haven't looked back and go every year for my checks and stress tests. No changes in 7 years, for that I am grateful.

              I rather have it and never need it, than not have it and one day it's needed.

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              • #8
                Hi Terrence,

                I'm in a similar situation in that I'm low risk, and probably even lower risk that you. In 1967 my mother dropped dead while doing laundry in her late 20s, and since no autopsy was done we don't know for sure what killed her (it was written off as a brain aneurysm). Cut to 48 years later and I started having blood pressure and pulse spikes that sent me to the ER, only to find out that I have HOCM. According to the European model for calculating risk of SCD, if you EXclude my mother my risk is about 3.2%, but if you INclude her it jumps to 4.7% chance that I'll drop dead in the next 5 years. My regular cardiologist sent me for a second opinion, and the blood pressure anomaly that showed up on a cardiopulmonary stress test was the deal-breaker that made them decide I should get one. Cut to 6/12/17, and this past Monday I was in the hospital getting implanted.

                So what I got is an Emblem S-ICD that goes underneath the skin, with no wires in the blood vessels and heart. At the moment I feel like I have a sardine can in my armpit, and I'm hoping that'll get better. I'm happy anyway because it eliminates many of the risks of the transvenous ICDs, though it has one big limitation: it can only defibrillate, not pace. Fortunately I don't need pacing, so this is just a seatbelt in case I have the big crash.

                I can't tell you what you should do, but that was my thought process. When my rhythm is normal and smooth it's easy to think I don't need a device, but when I can hardly put together 10 normal beats in a row it's nice to know the thing is there in case my left ventricle goes all tachy on me! That's despite metoprolol and veramapil by the way, though both are at relatively moderate doses.

                The website JillC was thinking of is probably pacemakerclub.com, which I just joined myself.
                Last edited by Bizarrox; 06-18-2017, 09:29 PM.

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                • #9
                  Personally, I'd rather be safe! You might not have the opportunity to be sorry...

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                  • #10
                    I was in a similar situation as well. My risk was 8%. Hardly worth messing with, but my doc was pretty adamant that I have one. So, i did in 2013. Went three years with no problems.....then had a VT Storm. It was the only reason that I am still here. There are other reasons for an ICD, but mine was the fast rhythm. A friend just was implanted with one because his heart just stopped. We hope it never happens, but sometimes it does. Like life insurance as many say! Wishing you the best
                    Diagnosed 1988
                    ICD Feb 2014
                    Mayo Dr Ommen 3/2014

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                    • #11
                      I'm not sure how anyone's considering chances of an SCA within 5 yrs that are like 6% and 8% to be low! If you had a dozen friends, each with an 8% risk, on average one of them would experience an SCA. Are your friends dying off that fast?

                      Those are pretty substantial risks, especially since the result is usually death.

                      Gordon
                      Myectomy on Feb. 5, 2007.

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