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AED (Automatic portible Defibs)

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Theguywiththebigheart Find out more about Theguywiththebigheart
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  • AED (Automatic portible Defibs)

    Ok still looking at possibly "installing" (if that aint a good description lol) an ACID and am looking at supplemental coverage by Samaritan and Phillips AED's to keep with me. Granted its only VERY partial coverage BUT I dont have to keep it under my skin and deal with all the ICD issues and possible complications. Anyone have thoughts on how these units function (Byphasic escalating shocks etc).

    Looking forward to your comments

  • #2
    AED's are great but not for those at high risk for sudden death-SD on a "regular" basis. Many "events" of SD occur while you are sleeping and others when you are alone. Thereby it is not the best idea.

    hope this helps.
    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


    • #3
      Hi Lisa et all,

      Lisa I know your a very strong advocate of ICD's and am surprised about your response. You shot this thread down very quickly. I would like to know why. Having an AED for some one who can not have an ICD to me would be better than not having. I think they should deployed EVERYWHERE and EVERYONE should be aware of them. They require little to know training. They can be enhanced by a bracelet for those in high risk. I am positive this would save lives. I think this thread deserves discussion and merits the worthy attention needed by those who have HCM.
      What I would like to see are comments by physicians in the use of these units on HCM subjets. Is a Biphasic response to AF acceptable and proper. Are there HCM bracelet ts? What are the storage temperature specifications of these units.

      Comments welcome by all.......

      Comment


      • #4
        I don't think that Lisa was being dismissive of AEDs. They certainly have there place, and every effort should be made to have them in public places. etc. where they may just save a life. These devices, however, are there "just in case" someone needs it.

        From what I understand, you have been identified as someone who has a higher than average risk of sudden death from HCM that a Dr. thinks should be treated with an ICD. For you the risk is higher than "just in case."

        What Lisa was saying is that an AED is not a suitable substitute for an ICD in a person who has the risk factors of HCM which suggest that the best course of action for them is the implantation of an ICD. ICDs monitor you 24/7. Noone else has to be around to save you. If you are sleeping, they will work. Conversely, with an AED, you have to be near someone who can operate the machine on you. Not only that, but if you were home with someone else who was on the other side of the house, they might not be aware that you were passed out and therefore, they wouldn't get to you in time.

        You always have to weigh the cost vs. the benefit, but for me, it was a no-brainer (once I got past the fact that I could no longer have MRIs -- that is another story, but I had a brain tumor that almost killed me too, so for me, it was about which would kill me first).

        AEDs do have their place to help those who don't have the benefit of an ICD, who didn't know they needed it, who have a heart attack suddenly, etc. You know the score, its up to you to do something about it.
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

        Comment


        • #5
          I am now really getting the feeling that I am not being understood.

          The merrits of having AED's are not being addressed at all by either of you. Supplemental support emergency medical equipment such as AED's is now accessible to all of us. I understand that they need to have someone else to administer it and that its problematic in many regards.
          So we should just ignore it and say anyone in high risk should just get an ICD. What is high risk? Its NOT a clear case for anyone and it is a choice for all us with HCM. Go look at the sudden death threads. Tell me an AED would not have been helpful if fully deployed and communicated/advertised.
          I am considered "high risk". The risk has been defined as 2-3% of an given HCM population by some "grey factors". What is a medium risk percentage? Whats a low risk percentage? Application of statistics is an art as much as a science. While I am considering an ICD I have no back up. I recently have learned about some new units and thought while I am waiting I should be safe and get a unit for the home. I am not sure which model (because we can not even get to that point in this discussion) or brand. Will they work for an HCM VF condition etc? I wonder how many of us are in this situation ie thinking about an ICD or those who have decided not to for what ever reason. There are also those with other medical issues who are not able to have one.
          My question is not to replace ICD's with AED's but supplement and enhance the situation for all who may need to be defiibed (not just HCM candidates). If they were $100 and could withstand storage temps from -40c nto 85C (typical semiconductor specs) I would have one in my car my boat my bike etc....Others would have them in mass and hence they would be used more and in time and hence save lives.

          I am still wondering why this discussion has stalled out here and shot down by two of the most active members here.

          I wonder if anyone on this forum has an AED. I wonder how many need ICD's and dont have one. I wonder a lot of things and for this reason I will keep this thread alive......

          Comment


          • #6
            If your question is could an AED if properly used save your life if it was administered at the right time, the answer is yes. I think the statistic is that to be resuscitated, you the AED has to be used within 2 minutes of the sudden cardiac arrest.

            Would it be better to have an AED around than to have nothing at all to protect you, again, yes.

            I don't know much about the technical aspects of AEDs, but clearly they do save lives.

            It would be helpful in saving lives to have as many of these things out in the world so that they are there just in case. There are several on this board who are working on this, including the HCMA I believe.
            Daughter of Father with HCM
            Diagnosed with HCM 1999.
            Full term pregnancy - Son born 11/01
            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

            Comment


            • #7
              You said :There are several on this board who are working on this, including the HCMA I believe." working on what exactly? Is there a better place to discuss AED's?

              Comment


              • #8
                Several members are working on getting AEDs installed in schools and other public places around the country so that they will be available to save lives.
                Daughter of Father with HCM
                Diagnosed with HCM 1999.
                Full term pregnancy - Son born 11/01
                ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                Comment


                • #9
                  I think your original question was taken as "should I get an AED instead of an ICD" and the answer was "no."

                  There wasn't any disucssion of AEDs good or bad or merits there of because there is no question that they save lives. I don't know of anyone who has a bad word to say about them.

                  As for the "Consumer Reports" type info you mention--you need to understand that it was only very recently that you could buy an AED without a prescription or for less than $3,000. I doubt there are more than a handful out of over 2,000 members who actually have one. They just haven't been available to the "home user" in the way you are talking about.

                  If you want detailed specs on different brands, you will need to do some research online. The info is out there, but I don't have any at my fingertips. As for discussing the mechanics of how/why they work--never seen it here or anywhere. It is my understanding they are pretty much all the same. I've read almost every post for the last three years and no one has ever asked about the merits of byphasic escalating shocks, so I'm not surprised it wasn't addressed.

                  Here are a few random links:
                  http://www.churchcentral.com/nw/s/te...te.html/id/612

                  http://www.americanheart.org/present...dentifier=1656

                  An AED doesn't care _why_ you are having vfib, it just knows that you have it and will shock you till you are normal or irretrivable or outside safety limits of shocking (300 joules).

                  You can now buy one on Amazon http://www.amazon.com/exec/obidos/tg...s=hpc&n=507846 This is the only retail AED I know about but there may be others.

                  Again, I don't think anyone is avoiding a conversation or "shooting you down" --not everyone reads every thread. I only know of one or two people on the board or related to board memebers who are ICD candidates who don't want one. Overall, most HCMers don't even qualify for an ICD, either.

                  You would also have to go online or talk to Lisa about high and low risk stats. I don't think the board conversations break things down that finely as those are not easy numbers to come by.

                  You can use the board's search function to find other ICD posts and see what you find regarding people going through the process. Also, the board zaplife.org is just for people with ICDs and you may get some insight there.

                  Sure, if AEDs were $100 I bet a lot of us would have them in the house. But they aren't, so the conversation is moot. Most people who would like them, don't know they are available or don't have $1,500 to spare. Durable medical equipment is not always covered by insurance or only covered partially.

                  I hope this addresses your concerns.

                  Comment


                  • #10
                    Hi,
                    I have not shot down anyone or any posting. AED's are one of the most important advances in public health in the past 20 years, I believe they should be everywhere..as much so as a fire extinguisher.
                    Those of us with HCM and HCM in our families may have a special need to have an AED near us, however it is not a simple question and it is is rather expensive. I have an AED in my home, I also have an ICD. The AED is not for me, it is for others whom may be genetically positive and whom are not at this point candidates for an implantable device. There is an emotional price to pay when you have an AED in your home and your entire family pays that price. I have chosen to pay the emotional price and keep my family safe albeit a bit too aware of cardiac arrest.

                    If you have a risk factor for SD, beyond having HCM, it is your choice to have an ICD or not. All devices come with risk and therefore should not be entered into lightly. I do not know of any doctor who would recommend having an AED in place of an ICD. I do know of some people who have not been able to get ICD's for various reasons and in those cases they are fitted with a "LIFEVEST" which is an external fitted defibrillator that is self activating should you have a cardiac arrest. http://www.lifecor.com/about_lifevest/when_to_use.asp

                    Having an AED at home while waiting for an ICD is not likely going to offer much additional protection.

                    The question of risk was raised - the answer is not one that people like but it is all we have. The fact is that with HCM we are all at a slightly higher risk then the non-HCM population. There is little scientific evidence to say what exact percentage risk anyone is at. We know the more risk factors you have the more likely you are to have an event at some point in your life. We also know people with no risk factors at all can have sudden death. Numbers as high as 6% have been used to describe the risk of sudden death in HCM - but other regional studies show the risk as low as .5%. I wish I had better numbers, and someday we will have better data, for now we can only act on the information in hand.

                    Please do not look at my posts as "shutting down a topic" - my post are nomally brief in the interest of time. This forum is open to discuss and exchange information, some postings get more activity then others it just happens sometimes.

                    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


                    • #11
                      All good points and well taken.

                      Thanks

                      Comment


                      • #12
                        Oh and here is a nice link as well. AED's for $1200. My assumption is that they will be half this price in about 18 months.

                        Comment


                        • #13
                          Here is the link oops

                          http://www.americanaed.com/

                          Comment


                          • #14
                            TGWTBH,

                            AEDs and AICDs aren't quite in the same class of device (not that you ever said they were) and the way AEDs operate really hasn't been a discussion topic on this board as far as I can tell. Your suggestion of using an AED as an alternate for an ICD warrants some discussion, though.

                            If you haven't already done so, you need to study the Sudden Cardiac Death discussion in the "Clinical Consensus Document" on HCM. In particular, in the "Prevention" section it describes (as I read it) a study of a high-risk group over a 3-year period in which AICDs eventually "zapped" their owners to correct ventricular arrhythmias that occurred in 25% of the individuals in the group. This is a sobering figure--25% over 3-years!

                            Consensus Document Link:
                            http://www.acc.org/clinical/consensu.../XI_sudden.htm

                            Now, here's one way of looking at your AED vs. AICD question:

                            To achieve the same level of effectiveness as AICD with an AED, you'd need:

                            A team of "watchers" providing 24/7 coverage to use the AED if it became necessary;

                            A portable, recording EKG to detect arrythmias and provide "event" alarms to your "watchers" and reports on such alarms to your physician; and,

                            the AED, itself.

                            (You could argue about the need for the portable EKG since there is an emergency detection/monitoring function in the AED and I'd give you that point.)

                            An AICD includes all the above functions and is a highly reliable and not really very intrusive (certainly less intrusive than a team of people watching over you 24/7). Sure, there are some probabilities of problems with the AICD for lead failures, device recalls, etc., but the likely outcomes of those device problems are certainly inconvenient but are not particularly life threatening. On the other hand, the potential outcomes of ventricular arrhythmias certainly do include real threats to life and AICDs are effective in fending-off those threats.

                            With the AED surrogate for the ICD is that you are betting your life upon either (1) not having an "event", or (2) the availability of an AED *and* someone who knows how to use it *at the time* you experience an event.

                            What is the probability of not having an event? Hard to tell, but the probabilities might not be very good. What is the probability of having someone around who knows how to use an AED? Could easily be a very low number, unless you've hired 24/7 "watchers".

                            I made my decision regarding an AICD based-upon the potential outcomes of various events/scenarios and the impact of the outcomes on my family. It was a "no-brainer" in my case.

                            Your choice is your choice to make and no one should be making it for you. Heck, it's not even possible for anyone else to make informed comments without info on what puts you into a "high risk" category! One item in the list? Or two or three?

                            Good luck,
                            Rob Thomas
                            --Living life on the edge .. of a continent!
                            Charter member: Tinman Club

                            Comment


                            • #15
                              AED's will only shock V-tach and V-fib rhythms only! As far as brands there is only one that I know of that I would stay away from because they just went out of business. Unfortunatly, I cannot remember their name for the life of me. I was reading it in my Fire/EMS magazine about two months ago. but they will not support you if you buy it.

                              and all AEDs are Biphasic.

                              Mary S.

                              Comment

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