Decision to get an ICD

  • by Donny
  • 2019-09-16 21:11:40
  • ICDs
  • 556 views
  • 19 comments

Hi, thank you for the support that this group offers!  I’m a 62 year old male and am trying to weigh the risks and benefits of having an ICD implanted and would love any and all perspectives and inputs that you can provide.

According to my doctors, I am on the “cusp” of needing an ICD. I have a slight risk of having a heart attack, but only slight. I guess any risk is not a good one. I have medium hypertrophic cardiomyopathy, meaning that the wall of my heart has thickened to a point between normal and high risk.  I had two short tachycardia events while wearing a holter monitor for 2 weeks.  I have many PVC events constantly.

Unfortunately, I have no family history to weigh into the equation since my parents and grandparents all died at an early age from other horrible things like cancer.

The thing that really torques me off is that I am pretty healthy otherwise and exercise hard 3 times a week, including HIIT cadio (high intensity interval training) and strength training just so I wouldn’t have heart problems!  The doc said there’s nothing I could have done to prevent this as it’s all gene related.

Of course, I need to make this decision for myself, but are any of you in the position that I’m in?  Meaning, haven’t had a heart attack yet but have the potential to have one and made the choice to get an ICD?

Finally, the question for everyone on this forum – what side effects / other problems have you had getting an ICD? Anything I should be aware of like lead brands with problems, complications afterwards, inappropriate shock issues, etc?

I know that’s a lot of questions, but thank you all for any help you can provide. I appreciate it more than you know!

Best to everyone,

Donny


19 Comments

Do I or don't I?

by AgentX86 - 2019-09-16 22:09:21

First of all, a pacemaker or ICD will do nothing to prevent or save you in the case of a heart attack.  That's a plumbing problem and pacemakers are a fix for some electrical problems. It's not going to help with PVCs, either (unfortunately). PVCs can be a RPITA but are rarely dangerous.  What it will do is save your life if those short tachycardia events become long tachycardia events.  V-tach can esily turn into V-Fib, which is deadly.

That's what I see as the upside of an ICD - it could save your life.  What do you see as the down side? Yes, there is a chance of inappropriate shocks and you'll have a few more visits with specialists.  I don't have an ICD so haven't studied the inappropriate shock issue (my brother has many "appropriate" shocks and I know they're not much fun) very much but you're already there with the more frequent checkups. Of course there is a cost issue.  What do you see as the down side?  I've found very few with my PM and loads of benefits.

Have another chat with your EP doc

by crustyg - 2019-09-17 06:26:50

I'm going to take a risk here: my understanding, from my previous career, was that the actual mechanism leading to death for patients with thickened heart muscle (e.g. HOCM, pulm or atrial stenosis) was a tachy-arrhythmia that progressed to VFib => death.  So while this might commonly be called a 'heart-attack', actually it's nothing of the sort.  Basically the heart muscle outstrips the available blood supply and the heart muscle cells start to fail and fire off when they shouldn't => VTach.  A 'heart-attack' from coronary disease *starts* with a reduced blood supply due to fatty deposits in the coronary arteries, which then form the basis of a clot on the arterial wall, which grows and blocks off the supply.  At *that* stage, yes, the heart muscle (normal thickness) has outstripped its blood supply, goes into VFib => death.  BUT even if you can shock these patients out of VFib, the blood supply issue is still there, and they go back into VFib => they die.  Not always, hence why stents and clot-busting can be life-saving when done in a timely manner.  But just the shock(s) alone isn't enough.

But with normal blood supply and a few dodgy cells struggling that fire off when they shouldn't, if the ICD can shock the ventricle back to normal (i.e. out of VFib), then normal service is resumed, you live longer.

I suggest that you have another chat with your EP doc, and test your understanding of whether an ICD would be likely to save you.  I *think* it would, but that's only my opinion - possibly outdated.

Life *is* unfair

by crustyg - 2019-09-17 06:31:49

I entirely sympathise with the 'this is so unfair' comment!  You live well, you are active and then life deals you a dodgy hand.

It turns out that good health in senior years is 50% good living and 50% good luck.  It's as crude as that!

When I was 18 one of my ambitions was to live longer than my dad - died of bowel cancer at 43, my maternal uncle died of congenital heart disease at 26.  So far, so good - except now I have a PM!  Dad's younger brother died a couple of years ago at 87, still running 5k every weekend.

It's luck (and genes)!

heart attack vs sudden cardiac arrest

by Tracey_E - 2019-09-17 09:50:54

They are not the same thing. With a heart attack, blood supply is cut off and part of the heart muscles dies. They can try to do cpr and get you to the hospital. Plumbing problems cause heart attacks.

SCA is when the heart suddenly goes into vfib and stops. Odds of surviving this are small unless it happens when someone has an AED nearby and uses it. That's why they give you an ICD, if you are at risk of a rhythm dangerous enough to cause you to die before you can get help. Hopefully you will never need it, but it only takes once to save your life. 

Eating right keeps the arteries clear and prevents plumbing problems. Exercising keeps the heart muscle strong. Both are important, but neither has anything electrical problems or can undo genetics. Only your doctor can tell you what your risk is and if you need it, but my advice is if they say you need an ICD, then don't mess around, just get the ICD. It's not a recommendation a doctor makes lightly. 

Needing an ICD for safety is totally different from needing a pacemaker for a slow heart. Some need both but it's the pacing part that's more likely to affect our lifestyle. The ICD shouldn't change it at all, it's there as your insurance policy. 

to be...or not to be

by ROBO Pop - 2019-09-17 13:51:56

Ok, you need to go into the bathroom (most any will do) look square into the mirror and realize the guy looking back ain't young anymore. You are headed to the inevitable and ain't gonna survive life. The warranty on your body is expiring and there's no trade in value on any of your parts. We all face this. You want to drag things out, get the defibrillator.

So you're between getting enhanced and staying limp. First I can attest from personal adventures this device ain't gonna help with a heart attack. That happens, take an aspirin and kiss your derriere goodbye just in case.

You've already gotten warning signs (V-Tach) so you really aren't on the cusp. V-Tach (which simply means fast heart eminating in the ventricle) often leads to V-Fib which really isn"t a beat but the heart is so fast and random that it quivers and won't pump blood. You lose consciousness in seconds. Now somebody else said survival of V-Fib is 5% without a defibrillator, but it's actually 25%. Still not good odds.

A defib can perform multiple functions. It's a pacemaker as well as being able to provide ATP (anti-tachycardia therapy) therapy if your heart is going too fast to prevent the fatal V-Fib. It's not a full shock and most never feel it. 

Then there's defibrillation therapy. Now I can tell you that it's not that bad. An instantaneous jolt to shock your heart back into a normal rhythm. I call them Jesus jolts as it startles you and you shout Jesus then it's over.

Yes there are risks associated with the surgery but quite low. They do 100s of thousand every year and are highly successful. I'm on my 3rd CRT-D (that's a defibrillator on steroids) and did have some issues with #2 but I'm still around thanks to my pocket protector.

My suggestion, get a device and move on with your life.

Appreciate the feedback

by Donny - 2019-09-17 14:42:12

Great insight, everyone. Thank you. I apologize for using the incorrect term "heart attack" and not "cardiac arrest" in my question. Still learning the lingo of my new condition. I'm still looking for more info and personal thoughts, so please keep them coming if any other members are reading this. 

I do have one more consult with my doc in a few weeks. Even he seemed reluctant to prescribe an ICD as he was the one who used the term "being on the cusp". I get the feeling it was more of a CYA for him. Better to say get one than have my wife sue him when I fall over dead. 

At any rate, all of your input is very helpful. 

On another note, does anyone know what happened to the ICDsupportgroup.org?  I had just signed up to be a member when the domain apparently expired. There were a lot of good comments there on more of the mechanical stuff like lead manufacturers with problems, units that have better battery life than others, etc. 

ICD Support Group

by ROBO Pop - 2019-09-17 17:10:06

Wish I could tell you what's going on there. My inquiries and communications with other long time members as well as some of the bouncers have been fruitless to date. Have heard nothing from Ron (TruckerRon) current owner of the site. Go Daddy is offering to sell the domain name but wants to be a go between for negotiations and charge commission. But what would happen to the actual web site and content?

Dang. And agreed.

by Donny - 2019-09-17 20:57:03

That's a shame, Robo. I hope it gets sorted out. And yes, If the latter happens all the years of that valuable content would be lost.

Angy, I agree whole heartedly (no pun intended).  I do the same thing.

Cardiac arrest out of the blue

by lildanishgirl - 2019-09-17 22:05:26

I'm a healthy 33 year old and I had a sudden cardiac arrest - completely out of the blue - in December. I've had mild Mitral Valve Prolapse ever since I was a kid but they never knew it would do what it did (and absolutely no family history of heart issues). I'm extremely lucky to be alive! If you have a cardiac arrest outside of hospital, there is a 1 out of 10 chance of survival. Luckily, I was at work at the time and my coworkers acted fast. If I had known - like you do - that I even had a chance of having a cardiac arrest, I wouldn't think twice about getting an ICD. Now that I've had it for 8.5 months, half the time I forget it's even there. And it feels so reassuring to have my own personal paramedic in my chest in case things go sideways again (knock on wood). It's unfortunate, but things like this happen when you least expect it. I was upset about being so young and needing an ICD, but it is what it is.

As for your concerns - so far, I haven't had any complications, etc (and I plan to keep it that way). The surgery went very well. The scar healed up really well and quickly (despite a small hiccup with a knot in my stitch that wouldn't dissolve and was preventing a small part of the wound to heal). And I haven't had any inappropriate shocks (I don't think it's common). The beauty of an ICD is that it basically sits there and does nothing until it (possibly) needs to save your life one day.

I have a Boston scientific ICD. I haven't had any issues with the device or leads yet (knock on wood). I don't know about other devices. I just chose to trust my doctors.

If you have any other questions, please feel free to private message me! All the best with your decision.

lost website

by Tracey_E - 2019-09-18 10:07:26

If the domain name wasn't renewed but the hosting is still current, the files are still on the server. If they're lost from the server they should be in a back up somewhere. Name registration (where the name points when someone types it in) and hosting (where the files associated with that site are stored) are two different things. Once a domain name is gone, it's not usually worth the trouble of getting it back. Best thing to do is get a new name, recover the files from the host server, and start again with a new domain name. If the site owner wants to fix it, it can probably be done. 

(sorry for the hijack, Donny)

ICD or not

by islandgirl - 2019-09-18 15:15:41

I also had a SCA 3 years ago, out of the blue, out of hospital, and join the elite group of few survivors, especially that have no chronic problems as a result of the SCA.  I don't understand the 'on the cusp'.  Either you need one or you don't.  Get a 2nd opinion.  Insurance has specific criteria for putting in an ICD.  I, like many that have sudden cardiac arrests are due to electrical/rhythm problems, not coronary artery disease or high blood pressure, are healthy and the cause is unknown.  Find out if the tachycardia events were sustained or not and where they originated from....atrium or ventricle.

Hypertrophic Cardiomyopathy.

by Selwyn - 2019-09-19 11:28:22

Hi Donny,

My hypertrophic cardiomyopathy is mild and seems stable at present according to my recent echocardiogram.

You are advised to have genetic testing as some forms are inherited from parents. My children have been screened with echocardiograms. This is only reassuring for the time being. You can develop obstructive hypertrophic cardiomyopathy later in life ( with a normal Echo and ECG years earlier). I am awaiting genetic screening . If your are positive for the various genes, your kids can have regular screening and genetic testing themselves.

Death is due to obstruction of the interventricular septum against the aortic root. Severe exercise is a precipitating factor.... please note! Surgery is possible ( prior to death!).

A heart attack is a lay term. Medics do not themselves use the term except in communication with non medics... arrhythmia, cardiac failure, MI, etc.etc. are more precise.

You should have your cardiologist's opinion as to whether "hard", strenuous exercise is allowable, given your diagnosis and degree of obstruction.

An ICD can be  life saving.  It only needs to be used once to save your life, though ICDs can be of use repeatedly.  Your death is a singular process. 

I once had a 17 year old drop down dead off his bicycle due to the obstruction from his unknown cardiomyopathy. Years later his Dad developed the same condition ( HOCM). There is on Facebook a dedicated group to HOCM. 

 

Great Comments, Selwyn

by Donny - 2019-09-19 13:53:04

Thank you! 

Yes, they advised genetic testing but the insurance won't cover it and it's around $6500 in my neck of the woods. My daughters looked at me and said "yeah, we'll just go get ECHOs. Save your money for the implant dedictible." 

Fortunately, My MRI and ECHO showed no obstruction right now. 

The Doc did tell me to stop the HIIT and heavy squats and stick with moderate static cardio and strength training, which I've done. 

So, do you have an ICD now and if so, was it preventative or have you had an incident?

Thanks so much for reaching out.......

I guess I'm different....

by BOBTHOM - 2019-09-19 22:22:20


I have a medtronic ICD.  It shocked me one year after implant, then paced me out a month later, and then shocked me 5 times in 15 minutes 8 months later.  With each episode my heart function grew weaker.  They first wanted to implant it back in 2005.  In 2017 I finally allowed them to implant it and have regretted ever since.  They no longer take any cardiac issues seriously.  I get the "don't worry about it, the ICD will fire and save you, and if needed it can act as a pacemaker until you get to the hospital. Don't worry about it".   Though the times it fired were called "appropriate", I can tell you that each time it felt like it grabbed my heart and wouldn't let go, making it worse until it did fire.  I feel that, had the device let go, my rythm would have returned to normal on it's own.  But that's just me and I'm sure others will poo poo it.   You ask for opinions/experiences, that's mine.  Oh, since the night of 5 times, they set the limit for when it fires to a higher level and haven't had issues since.  If your doctor really thought you needed it, he would have pushed for it.  They don't want to take chances because then they need to explain why their patient died.

I guess I'm different....

by BOBTHOM - 2019-09-19 22:22:26


I have a medtronic ICD.  It shocked me one year after implant, then paced me out a month later, and then shocked me 5 times in 15 minutes 8 months later.  With each episode my heart function grew weaker.  They first wanted to implant it back in 2005.  In 2017 I finally allowed them to implant it and have regretted ever since.  They no longer take any cardiac issues seriously.  I get the "don't worry about it, the ICD will fire and save you, and if needed it can act as a pacemaker until you get to the hospital. Don't worry about it".   Though the times it fired were called "appropriate", I can tell you that each time it felt like it grabbed my heart and wouldn't let go, making it worse until it did fire.  I feel that, had the device let go, my rythm would have returned to normal on it's own.  But that's just me and I'm sure others will poo poo it.   You ask for opinions/experiences, that's mine.  Oh, since the night of 5 times, they set the limit for when it fires to a higher level and haven't had issues since.  If your doctor really thought you needed it, he would have pushed for it.  They don't want to take chances because then they need to explain why their patient died.

BOBTHOM

by Donny - 2019-09-20 10:22:14

I'm sorry you've been going through what you have. I do want all comments and experiences - the good, the bad and the ugly. It is always frustrating when doctors and nurses take on an attitude of apathy and seem to not take you seriously when, to us, it's dead serious (no pun intended). 

Do you feel that the shocks were appropriate, or do you feel the doc just told you that to cover up a malfunction? 

Thanks so much for your insight,  Donny

Donny....

by BOBTHOM - 2019-09-26 22:41:33

The answer to your question is very misleading.  Based on the settings of the ICD, yes, it fired appropriately as my heart had exceeded the max threshold for the set timeframe.  In reality, I think that threshold had been set to low.  As it 'spun up" for the next shock all I kept thinking was it just needs to shut off for a minute and let my heart rate recover but all it kept doing was spinning up causing more of the higher heart rate and so it fired again, and repeated.  Since they set that max rate higher I have not had issues (knock on wood).   I'm glad I declined having it put in back in 2005 and I regret having it put in in 2017.  Each time it fires it causes more damage and stats of another followup shock are very high (4x).  But again, maybe it's just me.

Need to add more....

by BOBTHOM - 2019-09-27 18:52:26


Just to be clear, unlike most on here, I do have structural heart issues, damage from previous heart attack (blockage that could not be cleared).  It shows clearly on stress test blood perfusion scan black out map.  Anyway, with the heart failure diagnosis and EF at 24% they immediately wanted to put in a single lead AICD. My questions were 1) will it help/strenthen my heart?  and 2) is it reversable?   The answer to both was NO.  It would simply be a safety net in case my heart went into an erratic beat (Vfib) or stopped it would then zap me, stopping my heart so that it could restart in a normal rythm.  The more I learn the more I find how over sprecialized the doctors have become and they often lose sight of the bigger picture, focusing on their area.  An EP wants to put in a CRT device.  Another wants to do an ablation.  Another just wants more meds that didn't work before because maybe now they will work.  Now finally found another doctor that has found blockages in other arterires (iliac, celiac) and we are working to clear them.  You MUST be your own advocate.  And to do that you need to learn about your specific condition.   Good luck!

Got the ICD

by Donny - 2019-11-22 16:00:22

I'm officially a part of the "Club". Thank you to everyone who helped me with this decision.  Been a week and a half and so far it's all thumbs up.  

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