Regarding "shocking"

I have HCM and known about it now the past 4 years and I have chosen to NOT put that device in my chest until they improve it as when I reviewed the past  failure rate studies of these devices worldwide - it used to be a whopping 30% failure rate when inadvertent shocking was included in the analysis until they reclassified "inadvertent shocking" as not a failure!  To me shocking you at the wrong time when it isn't needed is a failure as you all can testify - its no fun to be shocked by these devices.

So I think while some people out there think that the device is "saving" you I suspect 99+% of the time the device is inadvertently shocking you.  Two people have died from these inadvertent events from what I read - (I just googled and read all the doctors reports from around the world on these devices) - and I think they have a lot of nerve to decide that inadvertent shocking is not a "failure".  They did this so they can now claim that failures with these devices are less than 1% now since inadvertent shocking was not classified as a hardware failure - sounds so much better than 30%!!

I hope the devices and the associated medtronic leads get better and these shock levels will go down - after reading your stories I don't see any changes if I take this to be a representative sample of what's going on out there so I will wait a little longer.  I hope to get one in the future when I see these shock stories reduce so I'm unfortunately having to gamble until then.  The doctors like these surgeries as I was told it could cost up to $100,000 so major incentive to do them - I'm hoping they are getting cheaper? 

Advice for people like me without them - I was also told to stay hydrated at all times and do not run anymore - just walk for exercise and don't lift heavy weights - just tone exercising and always stay hydrated and keep getting echos and ekg's done for those of you out there like me that will wait a little longer before doing this.  Regards.
tomrgold tomrgold
46-50
1 Response May 18, 2012

I could have waited longer too. I have HCM, and at the time I was measured, prior to getting the device, I had left ventricular hypertrophy and a septum that measured 38mm thick (but without obstruction), which put me in the range of those with "extreme high risk" for sudden death according to the literature. I had episodes of syncope and family members who died young (mom under age 60 and brother at 17 y.o.). I weighed my options, listened to the risk factors for someone in my position and chose the defibrillator route. It wasn't blind trust or a gamble that brought me to that choice, it was my family. (I had four doctor's opinions before going ahead and each time demanded that they evaluate me based on my heart and not the anecdotals or the studies, but me.) I am not sappy, but I am a sucker for responsibility and mine were to my children. If they inherit this disease (it is genetic and 1 out of 500 will get it) then they will be faced with this choice. I received the implant in 2005. I had one of the leads - a recalled one - implanted and it did fracture. I had everything replaced a year and a half ago. At that time, I considered getting it removed altogether - as both the device and both leads were being removed to be replaced anyway. But again, I am doing this for them. And it could save me some day. So far, it has just given my wife piece of mind and me some minor inconvenience and occasional irritation. But if I hadn't had it implanted for the past 7 years, I wonder if I would feel differently. This "experiment" has proven that I could have waited longer. Presently, if I were to go through this for one of my children, my advice might be to wait until there is a present danger specific to them (i.e. obstruction, low bp) - more than the evidence of family history. But that is not the popular thinking among doctors - likely because none would get paid for telling you this - sorry to be so pessimistic. I do appreciate and respect doctors for what they do - you all just have to find the right, non-alarmist ones that will treat you based on you and not try to fit you into a category that is defined in the research and doesn't quite fit you appropriately.

Here is the raw data:
I was diagnosed with HCM when I was 12 (heart murmur heard then diagnosis based on echo).
My brother with HCM passed at 17, when I was 16 (two weeks before he was 18).
This was the canary in the cave, but my parents were not sophisticated enough to have us all checked. (Autopsy confirmed "sudden cardiac death due to hypertrophic cardiomyopathy" and that was in 1988).
My mother passed at age 59 from cardiac arrest.
I was implanted at 33 y.o.
I had four prior episodes of syncope - age 16 with the onset of flu symptoms; age 21 with excessive exercise (bicycling hard and fast uphill on a 10-speed); and twice after a night of heavy drinking. (And episodes of near syncope with jogging to excess and also due to panic attacks.)

My advice if you are or are not getting a defibrillator: stay away from the excesses
don't drink alcohol to excess
definitely stay hydrated with water
don't take drugs that can speed up or slow down your heart
don't take anything that can speed up your metabolism (herbal, sports drinks, energy drinks)
don't exercise to excess
take precautions to stay healthy - get a flu shot, see your doctor once a year for a physical, etc.
take a daily baby aspirin (keep that blood thin and flowing) - talk to your doctor first
exercise regularly, but not to excess - not like the show Biggest Loser either.
don't lift heavy weights and take it slow
don't get stressed!!! I can't emphasize this enough.
ANYTHING that can put a stress on your body, including those difficult situations in life, need to be managed and avoided if possible. Work an easier job, if necessary. Find a new one if your boss is a creep. Do something you enjoy once a day to give you a sense of feeling good and find something that is a good escape: reading, volunteering, etc.
Overall, begin listening to your body and noting what makes you feel bad and avoid it, and what makes you feel good and do more of it. Caveat: don't do things that make you feel good temporarily (like drugs or alcohol) but can put a stress on your body and make you feel bad later.
Special note on caffeine: only drink or take items with caffeine in moderation. It can speed up the heart and that is not a good factor for someone with HCM.

I appreciate your honesty in this post tomrgold. My hope is that people will do what you did and educate themselves and make decisions based on what they know and feel about themselves. This is important. Don't give in to a doctor's warning unless you know that they are talking about YOU and not the statistics.

While I am glad I have the defibrillator, the truth is I could have waited and my quality of life may have been improved from it. Having it is a daily reminder of the risks I face, and why live life like that. The silver linings outweigh the cons in this decision. But I would not be in a position to encourage someone to do this - having now done it myself and seen that it was not necessary. And anything not necessary is not worth doing. I have this sage advice for my kids now, with the knowledge and experience I have attained. I have too the ability to speak with their doctors if they are in this position. My hope is they never will be.

All the best and God bless you tomrgold. May your decisions be made less difficult with the help and support of friends and strangers like me. Have a good, long and blessed life!