multiple shocks

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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ROBO Pop
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Re: multiple shocks

Post by ROBO Pop » October 16th, 2018, 10:10 am

ROBO Pop wrote:
October 15th, 2018, 5:35 pm

The device paces your heart at a faster rate than the tachycardia and then stops. They can program the number of attempts before stopping or giving the big one. I never feel it when I get one, which is like a regular thing for me, but some people do just as they do when their pacing kicks in. It's just a light electrical stimulation and not an actual shock.
can you tell the mind is slipping? I meant to say ATP (Anti Tachycardia Pacing) is where your device paces the heart at a faster rate than the tachycardia itself. The device pacing stops and in theory your heart goes back to a sinus rhythm...etc

My mind is slipping and I struggle to focus or ... see I just blanked out, no joke. It may be time to quietly fade into the background noise before I start sounding like Mrag
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

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ROBO Pop
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Re: multiple shocks

Post by ROBO Pop » October 16th, 2018, 12:41 pm

And while we are at it, when your heart stops, you do not get a Jesus Jolt. Jesus Jolts are triggered by very fast heart rates (Vtach) and very erratic heart rates (Vfib). A flat line (asystole) triggers the pacemaker as it is seen as missed beats or pauses.

TV enactments are pure Bull. If a person has no pulse shocking ain't gonna help. CPR may resuscitate someone but not a Jesus Jolt.those are to prevent cardiac arrest which frequently happens during vfib.

And Cpgal3246, what's it matter whether a jolt causes some damage? Would you rather die so your heart stays in perfect condition?
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

cpgal3246
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Re: multiple shocks

Post by cpgal3246 » October 16th, 2018, 2:07 pm

ROBO Pop: It definitely matters if my heart is damaged from 1 or more inappropriate shocks! If the jolt is appropriate then it saved my life. Otherwise it is doing more damage than good, to my heart as well as my mind.

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Ozchrissy
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Re: multiple shocks

Post by Ozchrissy » October 16th, 2018, 5:50 pm

Of course our heart is affected by the big shocks, there is a reason they happen, and who is to say it was from the shock. But what is the alternative. Don't forget that there is a reason we get the shock, our hearts are already damaged, so how do they determine if the damage caused is from the shock or from the damage that is already there. I would like to see how they came to that conclusion.

For me the shock is extremely reassuring. I have a magnificent printout of a shock occurring, when you see it in black and white, then you realize just how great these devices are. I got a shock whilst conscious, and then returned to normal rhythm, and then got one when I was unconscious. The print out of the event shows me in normal sinus rhythm, then going into Vtach, then getting the first shock, and going back into normal, then going into VFib, which looked just like a wavy line, then the big shock whilst unconscious, and then back to normal. I waited until I settled down and then drove myself to the Hospital and had it all confirmed. The hospital was just a couple of blocks away, they were more worried about me than I was. I new it was over, and I was ALIVE. Every professional in the ER was in the resus room to view the printout. I was a celebrity for a time there. wavhi However, even though they wanted to keep me overnight, as far as I was concerned I was fine, my device did its job, my reset button worked, and I got back on with my life.

Another shock I got was extremely good too. I actually had septicemia from a botched gall bladder operation, and went into cardiac arrest as a result. Now my device shocked me back, any other person in a similar situation, without our angel, would be dead. Heart disease or not.

So ok, it is not fun, our hearts are already damaged, but I am still going. I have had my device for 12 years now, and as I haven't really been keeping a count, I don't know how many shocks I have had, but I am still here, and living.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

dick
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Re: multiple shocks

Post by dick » October 16th, 2018, 8:01 pm

CPGIRL wrote:ROBO Pop: It definitely matters if my heart is damaged from 1 or more inappropriate shocks! If the jolt is appropriate then it saved my life. Otherwise it is doing more damage than good, to my heart as well as my mind.
Excusez moi madame. You are making a few assumptions here not in evidence. Are you saying all appropriate shocks are life savers? Have we confirmed beyond the level needed to confirm Climate Change that a heart is actually damaged with a shock? No doubt un necessary shocks cause mental problems, but that is a price of developing and testing theory. As in, let's elect a total moron and see if he/she can bankrupt and or destroy the world in 4 years or less so we'll know in the future. And then there is you have to break some eggs to make an omelet.
I was told that each shock/Jesus jolt, whether appropriate or inappropriate, damages the heart and increases your risk for it firing again or death by 4X

Has anyone ever told you they have absolutely no investments in Russia or Saudi Arabia? Or that trade wars are easy to win? I do not follow the "death by 4X." Are you saying someone told you that if your device fires you are 4 times more likely to die? Let's face it, the reason to get an ICD is because you are already more likely to die than the average person on the street. But I seriously question the Saudi doctor telling you that factoid. Do you know what the odds are that your ICD device will EVER fire, appropriately or inappropriately? Let me give you an example. Do you know the frequency of voter fraud in the US? Recent students indicate 30 cases out of 10 BILLION. 30/10,000,000,000. But instead of 4X chance, let's DOUBLE that and say 8X. Now we have 240 possible fraudsters out of 10,000,000,000. You get better odds with Powerball.

So you getting an ICD or what?

cpgal3246
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Re: multiple shocks

Post by cpgal3246 » October 17th, 2018, 9:05 am

dick – I guess you are correct that not all appropriate shocks are life-saving, but at least they were appropriate as far as the device recognized a dangerous rhythm and took action.

I’ve been doing some research, and I have seen several articles where they mention that people who have been shocked by their ICDs are at a higher risk of additional shocks and death than those who have not been shocked by their ICD. My doc has told me up to 10% of people with ICDs will receive an unnecessary/inappropriate shock due to the device getting confused by certain rhythms. That’s a really high number when you consider there are hundreds of thousands of people in the US alone with an ICD. Not exactly Powerball odds. Reading about “shock storms” on this forum is enough to make me stay awake at night. I’m just hoping that this is a very rare event and most people don’t experience that.

Another statistic I read about is the high rate of re-operation for lead issues – up to 27% for CRT-Ds – this is really high as well. Again, from browsing this forum, lead issues seem to be fairly common and that’s a scary thought as well. I’m just having a really hard time trying to figure out how to deal with all these “what ifs”. I’m an anxious glass-half-empty person by nature, and I just don’t know how I’ll cope with my anxiety if I get this device implanted. I know I should try to be more positive but its really difficult right now. I envy all of you who have these devices and lots of other health issues and just deal with it and stay positive and strong.

dick
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Re: multiple shocks

Post by dick » October 17th, 2018, 9:50 am

Don't take this wrong, but you read too much. And what you are reading seems old or misguided or wrong. You don't wear a red baseball cap for luck do you?
My doc has told me up to 10% of people with ICDs will receive an unnecessary/inappropriate shock due to the device getting confused by certain rhythms.
Do you have your doc saying that in a recording? My understanding is ONLY 8% of ALL people with ICDs will ever receive any shock, appropriate or inappropriate. But you think 10 % will receive an inappropriate shock? I think not. People are getting shocked less or are getting a lot stupider. Consider the INCREASING number of people getting ICDs and the people that already have them. If people were getting shocked, good or bad, don't you think this site would be overwhelmed with new members? Or perhaps those getting shocked do not realize there are free, anonymous support groups available on the internet. My local hospital/cardiology practice gave up on their twice a year group sessions for ICD patients. Not necessary?

Lead issues are there, but are minor. And putting in an ICD is a bit harder than a pacemaker , but much, much easier than a CRT. Get an EXPERIENCED EXPERT EP. Do not count on the local cardiologist at the strip mall who dabbles in doing implants.

Meanwhile, what's your story? I might be able to shed some light if you should even bother with an implant. I have a natural instinct for science and a big brain.

cpgal3246
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Re: multiple shocks

Post by cpgal3246 » October 17th, 2018, 10:27 am

I am getting episodes of non-sustained tachycardia, and have an EF of 35% and LBBB. History of prior MI. Have no symptoms such as shortness of breath, fluid retention etc. EP has suggested that I get a CRT-D but so far I am so stressed out about it that I'm almost paralyzed with fear. EP is hoping it will keep me from progressing and maybe improve my EF but obviously no guarantees, and from what I read, only about 70% of patients see improvement from the device, leaving 30% non-responders. I feel pretty good so I'm afraid of getting this device and my life completely changing from constant worry over it, frequent appts, battery replacements , etc
You're right, I do read way too much, but I work on computers all day so its too easy to read about all the things that could go wrong. Most of the articles I'm reading a fairly recent (within a few years) and from medical-related websites so I would assume somewhat accurate. And my EP is the one who gave me the 10% inappropriate shock stats and he's supposed to be tops in this field. He said he does between 20 and 40 CRT-Ds per year - is that a high number? I really don't even know....
I wish I knew someone with this device but I don't, and there are no ICD/CRT support groups locally.

dick
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Re: multiple shocks

Post by dick » October 17th, 2018, 10:43 am

On your latest EKG, there is a QRS number. What is it? As I recall, most people that do find benefit from a CRT have a QRS under 150ms. I could be off there, but this allows the great helmeted one to chime in, he would know. How old are you as if you are 95 getting a defibrillator is a clear waste and if you are 40, it's a deal.

You can always get the CRT-d and then have the d part turned off-no chance of any shock. My own thinking is the CRT and or ICD are over sold, but that's just and only me. I go back to the bastard insurance companies that if ICDs didn't work, they would never pay for them. So there must be a lot of folks where the device is worthwhile.

If you think you have a top doc in the field, why don't you just trust him?

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mykidsmom
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Re: multiple shocks

Post by mykidsmom » October 17th, 2018, 11:00 am

Ya know what...I feel..and this is my personal opinion......Ignorance a lota times is bliss.....if id had the option, the advance notice, the time to research the pros and cons of getting an ICD im not sure id actually even want one lol...all this info can be terrifying...and sometimes less knowledge is a good thing.

I didnt have an option...it just appeared...then i was so worried id lost my mind i was too busy trying to figure who are the nice people around my bed were to even worry about heart issues lol....so in effect my icd just arrived...it didnt impact me in any way....by the time i realized it was there...it had found its own pocket...and saved my life a couple of times...so really what was there to complain about. i still make it my mission to as long as im feeling well.....not to question my heart....worry about it...or be anxious or scared.....because....having had 7 cardiac arrests where i was flat gone out.....and several multiple organ failures i know every day is a bonus.....and im irish...so i dont waste bonus days.....life is short enough without wasting it worrying about things you cant prevent or help.......i have an issue i go to the dr if i cant fix it myself.....if the dr gives me information and advice that sounds sensible (all drs are not sensible) i'll follow the advice..if i dont think its sensible..i'll ignore it....so far ive lasted 39 years heheh...

I remember asking my dad....how come at 85 you dont have a grey hair in your head....and he goes....well your mom and i had an arrangement....she worried about everything except bringing home the paycheck.....i worried about nothing and always brought home the paycheck....(my mom died at 44.....) so.....i didnt need any more lessons....

Incidentally all shocks are NOT equal....not in how they affect us.....Ive had shocks i didnt feel which the icd showed as bumping off the richtor scale..and the cardiologists actually called me a liar cos i didnt feel them......we are all different..yes i felt the 22 shocks....id describe them as something you might feel if you got a slight electric shock from a hairdryer or something....the jesus jolt i felt was like a large bullet going thro me.....no feelings of electrical anything...but it knocked me to the ground throwing up....and yes they were all appropriate according to the 5 cardiologists who reviewed the printouts because they couldnt believe id survived.....id been to the family dr the day before having a heart attack which didnt register on his machine lol...cos yes he did some tests....and his diagnosis was maybe i was having a bita indigestion lol
I think.....Therefore I am.!!!!!

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ROBO Pop
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Re: multiple shocks

Post by ROBO Pop » October 17th, 2018, 11:05 am

You know cpgal, unlike many of our members, you've had the luxury of thinking this decision over. Whether rightly or not, what you've read and heard is driving your decision. This device is not the right answer for everyone.

I'm not here to convince you either way. It sounds like you've made your decision and we support you in that. Tell your EP you aren't interested and stop stressing over this, it'll just shorten your life
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

cpgal3246
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Re: multiple shocks

Post by cpgal3246 » October 17th, 2018, 11:23 am

dick - I believe my QRS was in the 140s range. I am in my mid 50's. I just met my EP, so I don't really know him but I've heard he is very good. Not much of a bedside manner though.
ROBO - I have not made my decision yet. I don't want to let my fear make my decision for me. I want to do whatever is best for me to keep me as healthy as possible for as long as possible. I know there's no crystal ball, but there are just a lot of uncertainties right now. I've never been much of a gambler, so this is very stressful for me.

Leedur
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Re: multiple shocks

Post by Leedur » October 17th, 2018, 2:05 pm

There is no way of knowing what your future health will be. Life has few guarantees. I've only been shocked twice and it was not that bad. I don't run around daily worried about getting shocked.

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Ozchrissy
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Re: multiple shocks

Post by Ozchrissy » October 17th, 2018, 7:29 pm

I am sorry, but I am going to talk straight. I was diagnosed in 1999, at the time the CRT-D was not even available. I got mine in 2006, and it was a pretty new technology. I am STILL HERE. If you want to take the risk and let yourself be ruled by your anxiety, then go ahead. As Robbo said, just don't get it and take the risk of dying earlier than you could anticipate. We are truly blessed today with what is available to us in the way of Heart therapy, and to carry on the way you are about this device, that is there to keep you alive and improve your quality of life, and millions of people around the World do not even have the opportunity to have it put in, is extremely selfish and childish.

Sorry this is harsh, but I have been through, and a lot of us on here also have, serious illness for years, and if it wasn't for Modern Medicine and these brilliant devices, we would be pushing up daisies. I suggest you start looking at the glass half full, accept your heart is not healthy and you do need assistance to keep it going. These devices give us a quality of life for years, yes you will die eventually, but believe me, you will live a lot more years as a result of these devices you are so negative about.

I have even had a new mitral valve inserted, the first in Australia. When it was put in there were only 6 people in the world who had this done. Two of them had died. I did not even consider that possibility, I wanted to live, I am not afraid to die, but I have a lot to do before then at the moment. If we lived our lives looking at the negatives, we might as well sit in a corner and suck a dummy. Life is full of the unknown, we have to get on with it, and live our lives. You sound like you want to give up, not embrace what opportunities you have, so if that is your decision, go ahead. I am sure that your family and friends are also the subject of your anxiety, please consider those around you, they are also living this experience with you, and believe me we do impact on others when we are obsessed with our own health.

It does come to a time where you have to weigh up the quality of life issues seriously, but for me that time hasn't come yet. When it does, I know I have done all I can to keep here, and be able to contribute. That is a life well lived, your approach is just a waste.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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mykidsmom
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Joined: February 9th, 2012, 5:09 pm

Re: multiple shocks

Post by mykidsmom » October 18th, 2018, 7:40 am

good post chrissie !!!!!!

and let me add.....unless your lucky enough to be like some of us who keep being revived from death by our ICDs, death is death and forever...and youve no method of avoiding it when your number is on the board....sometimes not even with an ICD, so grab life, grab the time youve got...(cos you never know the second or the min) and enjoy it......dont waste it worrying over something you cant prevent....if your drs think you need an icd to extend your life.....get it....and chrissies right......theres not just you..theres your family who are probably going thro equally amounts of stress worrying and are helpless.....and if you really cannot control your stress and anxiety get a referral to someone professionally to talk to...cos your mental health is very important x

get your ICD, take your treatment...and get on with your days...every day is precious.
I think.....Therefore I am.!!!!!

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