Implant ICD ?

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

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Mickeyd
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Joined: May 15th, 2018, 10:45 am

Implant ICD ?

Post by Mickeyd » May 16th, 2018, 12:27 pm

Hi Everyone,
I am Mickey and am new to this site. At 35 I was having angina and went in for angioplasty. I'm now 66 so that was some time ago and I think they mainly just did the balloon then and not so much the stent. Anyway as I entered recovery room, artery collapsed and rushed into open heart bypass.
Felt great for years and then in 2013 I again was experiencing angina and had stent put in the artery bypass. a few months ago I had to have hernia surgery and of course had to get clearance from my heart doctor. He gave the ok, but said the electrocardiogram showed low ejection percentage 20%
Then did a catheterization and said it confirmed the 20% and said we should put an ICD in. He said I have ischemic cardiomyopathy without indications for pacing.
He wants to implant a dual chamber ICD . Now, as I stated that in both my bypass and stent I was having severe angina and other symptoms but currently I have never felt better. No symptoms of low ejection rate. No shortness of breath, No swelling, No angina, Nothing, I would not have even known if I didn't need hernia operation.
I have searched this site and have to admit I find all the horror stories about shocks, flurries of shocks, and inapropiate shocks very disturbing. I am wondering if the fact that I am feeling so well at present with no symptoms at all, If getting the ICD implant could be a mistake ?
Any opinions would be greatly appreciated.
Thanks Mickey

PS, I also read in one post ." You want an EP with a verifiable and real history of success and a lot of experience" . I'm in the Phoenix area and it will be done locally, not at john hopkins and I have tried to find reviews and history on my EP but can't find any. Does anyone know of a site where this information can be obtained ?

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Jim and Sparky
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Joined: April 11th, 2011, 2:28 pm
Location: Wichita Kansas

Re: Implant ICD ?

Post by Jim and Sparky » May 16th, 2018, 1:45 pm

My opinion only, there's a lot of smart people on here, but...

I've had my ICD for over 7 years now and it has done nothing except some pacing to 60 bpm at night. And I think most recipients are that way, no shocks or adverse events. Sure there are many who have experienced some real troubles with ICDs but most of us here will tell you otherwise. Plus, if the thing is programmed correctly (and most are), you'll be certainly very glad that it does what it is expected to and get you out of a severe problem very quickly.

I was very concerned about it too for some time, but then I hear that the shock is over quickly and there is much comfort in the fact that it is there and designed to help. It is amazing that they work as well as they do.

I say a second opinion might be in order, but fear of the device itself should not be the issue. The issue is more your condition that lead to the consideration of the device. Just Sayin'

Jim (and Sparky)
MI 1/21/11; SCA's 2/3/11 and 2/4/11
I have a Boston Scientific Teligen ICD and a Boston Scientific Promus stent,
I guess my cardiologist is sort of a BS kind of guy.

Two rules to live by:
1) Don't sweat the small stuff!
2) It's all small stuff!


My Intro is on this page: http://www.icdsupportgroup.org/board/vi ... 917#p74917

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mrag
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Re: Implant ICD ?

Post by mrag » May 16th, 2018, 2:29 pm

I agree with Jim. And keep in mind this place is sort of like going to an AA meeting. If that is the only place you go, then you might start thinking everyone is an alcoholic. In the past decade (?), the ICD has been improved at least in terms of shocks. They are much better at determining what is going on with your heart and what to do and when. So I'd pretty much forget about those concerns on getting an ICD/CRT.

Concentrate on what the CRT is going to do for you either immediately or down the road. A good EPs can implant a pacemaker or ICD. There is a bit more skill involved with a CRT implant. What's your insurance company say? I'd say Second Opinion time.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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ROBO Pop
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Joined: September 14th, 2009, 2:36 pm
Location: the Oval Office

Re: Implant ICD ?

Post by ROBO Pop » May 16th, 2018, 2:52 pm

Why get an ICD? The question on your mind should really be why not. While you are not experiencing any symptoms of your condition, you may not until you are standing before St. Peter at the rumored purly gates. Fact is at 20% ejection fraction (EF) you are at much higher risk of sudden cardiac arrest which few survive without intervention. 30% EF is usually the threshold for that. Now to be clear that number is something you should mostly ignore and focus on how you feel, the numbers allow doctors to gauge your condition in the absence of symptoms.

Sure we get a lot of whiners here, but rest assured as mrag and Jim said it won't seem like a big deal if you get a Jesus Jolt and it saves you. Why did I dub them Jesus Jolts? Because they hit, you have just enough time to shout Jesus and it's over in a heart beat. Seriously it startles you more than hurts. Now again as the others said, shock storms are rare and most EP's are skilled and trained on properly setting up your device to avoid unnecessary jolts.

There are a lot of good hospitals in Phoenix and certainly a lot of experienced Electrophysiologists who can successfully perform the procedure for you. I wish I could recommend one but I live in Tucson, 120 miles away and have no real experience in Phoenix medical adventures. I suggest you contact the local Mended Hearts chapter and ask for recommendations. You can go to their web site and get the contact details mendedhearts.org

Your decision, you may cheat death for a long time without it...you a gambling man?
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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4EverHopeful
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Joined: January 27th, 2012, 11:34 pm
Location: Knotts Island, NC USA

Re: Implant ICD ?

Post by 4EverHopeful » May 16th, 2018, 9:12 pm

They may have caught your cardiomyopathy in it's beginning stages therefore no symptoms yet? If so, that's even a better reason to have the implant. Better chances of improvement i.e. strengthening the heart.

My dad is a good example of early intervention. After having a pace maker since his 70s, at 81 yrs old, his yearly echocardiogram showed his EF dropped to 25%. They implanted his first CRT-D. Five months later, EF recovered to 45%. Two years later, because of the St Jude's battery recall issue, they replaced his CRT-D. His EF is still at 45%. He's now 85 and playing golf 2x per week!

I had my first CRT-D implanted in 2012, EF at 20%. Today my EF is at 30-35%. Less recovery than my dad. I'm sure I had my cardiomyopathy longer before discovered. I was healthy, working out 3 days a week, ran my own business, so no need to see a doctor very often. I ignored the symptoms, thought it was just part of life being so busy.

Even though my dad and I both have nonischemic cardiomyopathy, our heart cases are totally unrelated and are different. Mine is severely damaged, his isn't. He has more energy than I have! Even though my EF is low, the CRT-D has definitely made a difference. I have been stable for 5 years now, other than one ablation for PVCs. No hospital visits. I feel totally protected since "Bubba II" (second CRT-D) has been on board. No other issues so far. I'm blessed and thankful for every extra day it has brought!
Phyllis

God's prescription for the heart:
O LORD, You have examined my heart and know everything about me. You know when I sit
down or stand up. You know my every thought when far away. You chart the path ahead of me
and tell me where to stop and rest. Every moment You know where I am.
Psalm 139:1-3

Non-ischemic DCM 09/11
PVCs, LBBB, leaky mitral valve
St Judes CRT-D (Bubba) 02/12; (Bubba II) 09/17
EF 20% 09/11; 25% 07/12; 35% 02/16
Failed PVC Ablation 11/12
Coreg, Zestril, Asprin, Aldactone, Lasix, Zocor, Levothroid
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codman59
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Location: NB, Canada

Re: Implant ICD ?

Post by codman59 » May 17th, 2018, 6:42 am

My 2 cents... I'm thinking that seeing the reports of inappropriate shocks and shock storms are seen here simply because if practically anybody has them or gets an appropriate shock, they're going to write about it here, as there's lots of people here that understand what they're going through (as opposed to people out there without an ICD).
I would venture to say that the majority of members on this site have never had a shock, and will likely never have one, and also do not write here much.
I'm 59 years old this year and have had an ICD "onboard" since 2008 (I'm currently on my second one) when EF was measured at 25%, and told I would likely never get a shock... it was an insurance policy. Since the start of 2014, I've had 5 appropriate life-saving shocks, all due to going into V-fib; I'm still on the top of the turf, and still relatively active.
No, I certainly do not regret agreeing to have the implant.
Cardiomyapathy (reason unknown; suspect viral infection 1998), chf, gout, diabetes, asthma, bad hair.
Medtronics Virtuoso VR implanted Aug 28/08, single lead.

"The generation that would change the world is still looking for its car keys" - "The Rainmakers"

Craig

Mickeyd
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Joined: May 15th, 2018, 10:45 am

Re: Implant ICD ?

Post by Mickeyd » May 17th, 2018, 10:32 am

Thank all of you for your replies. There may have been a little confusion on a couple replies thinking they want to implant a CRT but its a AICD with two leads. My doctor said he does not use single leads anymore, and that mine is not a pacing problem but that the ICD will mainly be there to shock if I go into cardiac arrest. My Ischemic cardiomyopathy "weakened heart muscle" was a result of a heart attack or coronary artery disease not a pacing problem. The catheterization showed my arteries are all clear now, and the fact that I feel great with no symptoms is the reason I'm questioning having the implant. Being that its scheduled for next week leaves me no time for a second opinion unless I cancel it. I understand that it would be like an insurance policy, I'm just trying to decide if its really necessary. I'll just keep researching and reading post and make my decision next week.
Again, Thank You all for your replies
Mickey

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mrag
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Joined: February 10th, 2009, 4:56 pm
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Re: Implant ICD ?

Post by mrag » May 17th, 2018, 12:27 pm

I understand that it would be like an insurance policy, I'm just trying to decide if its really necessary.
Just about every insurance policy I ever got I had to continually pay cash for with monthly premiums. The ICD is going to be a "free" (if there really is anything free anymore) insurance policy so there is that difference.

What is the upside if you don't get the device? What is the downside if you don't?

I've mentioned this elsewhere several times before, but in deciding, your insurance company might actually be your friend. They are not inclined to pay big bucks for things people don't need. If they're ready to pay for yours and its upkeep, what might they know they we don't?
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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