House Insurance

I know I am at risk, having the gene associated with a certain channelopothy linked to sudden cardiac death and my ekg shows what could be called a slight abnormality so I have been recommended by a great expert to get an ICD. But I cannot find any cases of ICD's saving anyone. I have found lots of people getting shocks from their implanted cardioverter defibrillator but know one seems to be sure if it was needed therapy or a malfinction. Niether on line or from my doctors can I get a picture of how many people wind up actually being saved. More and more the ICD which i have not gotten yet is feeling like home insurance. I have home insurance because if the house burned down I would lose everything but my house will likely never burn down and the only reason i really have it is  because the mortgage requires it. 

Has anyone else noticed that there is so little evidence of ICDs saving anyone, ever? I love the idea of them, seems like beautiful useful technology but man oh man I  do not want wires in my veins plugged into my heart and a heavy metal case shifting around under my skin if i can get away with not having them.


10 Comments

"Saved A Life"

by Gotrhythm - 2019-02-05 15:03:14

Not sure what your definition of "saving a life is." If you mean stopping a potentially fatal fibrillation and allowing the heart to return to a normal beat, then yes, I do know of an ICD that saved a life.

But I'm not sure "saved a life" is really the correct terminology. Everyone dies of somthing eventually. But there is no question that the ICD can extend life past what would have been expected without it.

 

More like Life Insurance

by Grateful Heart - 2019-02-05 15:23:56

You can always rebuild a house....not always your heart/ life.  If you are not trusting the experts who advised you, get another opinion to be sure and ease your mind. 

None of us wanted these devices.   I have a CRT-D (sometimes the terms are interchangeable).  So far, my device has never shocked me but I have definitely gained major heart improvements in the 10 years of being paced.  There are pros and cons to everything. 

Do your research....but don't overthink it if a second opinion confirms it.  I almost left the hospital before my first implant when I heard they were going into my heart.  No one explained exactly what would take place before that day.  I wouldn't still be here if I left.

ICD's have most definitely saved some on this site.  Hopefully they will respond. 

Good luck.     

Grateful Heart

pacing

by zebrashadow - 2019-02-05 15:54:15

As I do not need any pacing, only a shock if the electricity shuts off, so I have been asking and looking for evidence that someone needed their heart restarted and the ICD did that. It is not a lot to ask or wonder about when they are putting wires into my heart.

Talked to a cardio nurse...

by donr - 2019-02-05 16:14:02


...who is a good friend & has over 30 yrs experience in the business.  I called and asked her your question.  She has witnessed an ICD do that in clinic,  MOF, IIRC, she shered the jolt w/ the man, since she grabbed him as he was about to fall off the exam table.She knows of many more people who have been saved by their device.  Her advice to you is: "Ask the EP how to get to the OR fastest - you are a ticking time bomb."  She related to me the tale of a 35 YO woman who had the same problem you have - she went to bed one PM and didn't wake up..

You have asked a questiion with an answer that essentially says that the dogt biting a man makes no news.  the man biting the dog does.  We have many peopls here who report mis-firings, & ICD firinfg storms.   They don't routinely report that their ICD saved them.

According to my RN friend, current ICD's are progrmmed to progressively increase the size of the jolt & it may start off so low that it shuts down a potential SCA w/o the host being aware that it has happened.  

It is better to have it & not need it than to need it & not have it!

Donr 

You are looking for...

by donr - 2019-02-05 16:27:58


...some good excuse to say "No.!"  I haVE COMMENTED O MORE THAN ONE OCCASION THAT TO THE SURGEON pm IMPLANT IS A MINOR PROCEDURE, BUT HE/SHE IS NOT THE PERSON LYING ON THE TABLE ,TOTALLY OUT OF CONTROL OVER THE SITUATION  while some one is mucking around in their one & only heart w/sharp instruments.   This is NOT aN UNUSUAL ATTITUDE TO HAVE.  mof IT IS PERFECTLY NORMAL! 

Why don't you look in a Minneapolis phone book, get the number for Medtronic & ask THEM this question?  I'd betcha they can answer it..  This situation is just like the crappy call that stole the Superbowl appearance from the New Orleans Saints - there is NO replay of the episode when you needed the ICD & it wasn't there.

Donr

donr

by zebrashadow - 2019-02-05 18:54:24

thank-you

ICD works

by islandgirl - 2019-02-06 16:24:32

I have an ICD following an out-of-hospital sudden cardiac arrest 2 1/2 years ago, 30 minutes of CPR, 5 shocks, and I'm alive and able to work and live independently.  I had a PM put in as an emergency a couple of years earlier for sick sinus syndrome---too slow of a heart rate with long pauses.  Lately I've been seeing my electrophysiologist every 2-4 weeks because I have been having sustained ventricular arrhythmias.  Last month, 21, with rates 260-270, that were all paced out with the ICD.  I have never had a shock, and inappropriate shocks are more rare now.  My EP says the ICD is doing it's job.  He warns me I will most likely be shocked at sometime.  Meds added and adjusted, so the last 2 weeks, no ventricular arrhythmias.  

Get a 2nd opinion if you questionyour dr's recommendation.  If I said I didn't want an ICD with my EP, I'm sure he would have released me from his care.  

ICD technology is changing, with fewer inappropriate shocks, as well as adjustments the dr can make.    

islandgirl

by zebrashadow - 2019-02-06 20:18:41

Thanks for your personal share. And thanks for the others as well.

I trust my doctor, he is the best in our city I reckon. I turts that he properly identified a mutation and that there is a risk there. What he could not tell me was if i will ever need it. It seems like house insurance that i should i have i might need and if i need it i will be glad i have it. I do not need pacing only a shock if my electrical system pauses. I have never fainted and have never had any unusual problems. Only a gene that is associated with sudden death and an unusual ekg. I am 54 and made it to here. I am leaning towards getting the ICD this summer. It's a heck of an intrusion in my body for something that might not happen. 

Your feedback was useful in my consideration. Thanks.

 

What's s special about...

by donr - 2019-02-06 22:34:01


...summer?  What's wrong with next week?  Or tomorrow.  those genes don't get worse with age.  Every day has the same probability of the catastrophic event occurring.  If he could tewll you wheter or not you would ever use the device, he'd make his living playing the stock market, not being a cardio surgeon.

Here's why you don't wait.  Tom Y.   College classmate, age 27, went to see a Dr. because he felt bad.  While sitting on the exam table, he suffered an SCA.   This was before the first PM/ICD was developed. 

Frank B.  worked for me as an engineer.  Scheduled for a bypass on a Friday.  talked his surgeon into waiting till monday because of sdome family event.  Died on Sunday./

You just don't mess around with these cardiac issues.  there is no backup to the human heart.  That's why so many of us PM/ICD hosts go to the ER, are told we need a PM /ICD & get it that night or the next day.  That happened to me.

Donr.

Research the data...

by CyborgMike - 2019-02-23 20:16:22

Zebra,

I also have a genetic channelopathy (CPVT), but I was symptomatic when I got my ICD. For my specific condition, some of the docs recommend against an ICD, due to the ICD shock invoking the condition and causing an electrical storm of shocks. So I researched the data hard on the NCBI site. After I did the research, I came to the conslusion that ICDs saved way more lives (40% in my case/condition) than caused harm (about 3% in my case). 

In the ICD studies they classify an "appropriate shock" into three or four catergories, everything from sustained VT to syncope (fainting) to cardiac arrest. In my book, any of those "appropriate shocks" is likely saving a life.

Below is a link from NCBI evaluating effectiveness of ICDs with BrS. Of 51 BrS patients with ICDs 11 had appropriate shocks (saved life) and 7 had inappropriate shocks (that sucks, but didn't kill you). Most of the inappropriate shocks were younger and recently implanted. So, 20% were "saved by the ICD". There are a number of studies regarding ICDs for BrS on NCBI. Do your own research and talk over with your doctor. If it were me I would also get a second opinion to verify the BrS diagnosis. If it were me and the diagnosis were confirmed, I would buy the house insurance...

Good luck!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5357861/

 

You know you're wired when...

Your old device becomes a paper weight for your desk.

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