ICD Removal

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SpruceSniper
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ICD Removal

Post by SpruceSniper » November 26th, 2017, 5:30 pm

Hi this is my first post here,

14+ years ago I thought I had been diagnosed with ARVD, and implanted with an ICD. I've lurked here a bit and it seems the top posters (the ones with likely good information) don't seem to have too high a tolerance for SOB stories so I will save you the yarn about how this device and supposed diagnosis has ruined my life top-to-bottom. I had had two fainting episodes during a short time. I did holter monitor testing, MRI, ECG, EKG, supposedly nothing caught it except the presence of a slight abnormality in the EKG, I believe it was. I was prohibited from leaving the hospital, and told I had to get the device or face an 11% chance of survival if the fainting occurred again, vs 98% chance of survival with the device.

Now, many years later, after living very actively-mountain climbing, competitive badminton, and everything I could do to cause an event to occur, and with device downloads through the years that had NO episodes, I was told by the original EP that I was not diagnosed with ARVD but had the cardiomyopathy and atrial wall thinning, and that was the reason I I got the ICD.

I've fought hard to simply live a productive life and at this stage of the game believe removal is the best course of action if I want any advancement in my career. I welcome opinions as well as anecdotal experiences. Thanks for your time.

-Dan

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Leah
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Re: ICD Removal

Post by Leah » November 26th, 2017, 5:35 pm

Hi Dan
Welcome. I had my ICD for 16 years and no shocks. I was thinking in the past to remove my ICD too but then I thought about it like 5 times what if I really needed it someday. I have dilated cardiomyopathy. Good Luck,
Leah

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mrag
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Re: ICD Removal

Post by mrag » November 26th, 2017, 6:47 pm

What kind of career are you in? If your ICD has not gone off, has not prevented you from badminton or mountain climbing, I'm kind of lost as to your complaint. Is it the extra 5 oz of metal buried in your chest? And if you insist on removal, why remove it, turn it OFF. No surgery, no infection chance.

I think there are a lot of folks out there wondering why they ever got ICDs. Probably a lot of them also wondered why they had their tonsils removed after they got a few sore throats. Alas, that's the state of medical care in the US of A. Fortunately some politicians now see a way to correct this problem by just preventing people from having insurance or making it so expensive that they won't buy it.

Maybe if we had some more details, a more refined answer could be forthcoming.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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freckles1880
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Re: ICD Removal

Post by freckles1880 » November 26th, 2017, 7:51 pm

It sounds like even though you were told the wrong reason, you still needed the ICD. I believe that you should just keep it. You seem to live a good life and it is still there as added protection. Seats belts in a car are not there to save you unless they are needed.

Also, in my opinion, taking out the ICD completely could be more dangerous to your health than leaving it in. Any surgery is not always safe.

How would you have lived your life differently?


wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

SpruceSniper
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Re: ICD Removal

Post by SpruceSniper » November 26th, 2017, 8:36 pm

I had thought about it after my OP that I should have included vocational details. I had been preparing to become a professional pilot. FAA says no way to my device. I was told by the EP that I couldn't do welding-so an ironworkers career was out as well. (I doubted this years later-called the device manufacturer on a hunch, and was told I could weld up to 400amps as long as the ground was as close to the weld as possible and the point of contact where the weld was being done was at least 18" from the device, and that I didn't perform "pulse" welding) I went to school and spent around $60K between education, tooling, and some to cost of living to get a 2 year degree in diesel technology. I worked in the field for over a year, and unfortunately in Alaska, an oil-dependent state, took a dive as the prices of crude did in 2015. I scored another heavy truck shop job as apprentice diesel mechanic so I could begin advancing my career in late 2016, at a liveable wage. I went into the ME's office for a physical prior to taking the test to get my Commercial Drivers' License-which is a required part of working in the field as a diesel mechanic/heavy truck mechanic. He told me I was disqualified due to the ICD; a pacemaker is fine but an ICD is not. His words were "the device goes away, the problem goes away."

I am aware of the dangers associated with removal of the device, and moreso with lead explantation. Frankly at this stage, a death on the slab while already asleep would be a sweet relief from the past 14 years. Auto mechanic job you might suggest? Not a chance I can make a living at that, even as a dealership mechanic, due to the learning curve-there are significant differences in the way a mechanic analyzes, diagnoses and repairs, or suggest repairs in a consumer auto shop vs a diesel shop-it's much lower paying, the flat-rate pay system is crooked as hell, and I'm 35 with basic education and getting to the point where physical labor is only going to benefit me if it's skilled, as most sectors I am competing against 18 year olds. My wife's been injured for 2 years, we lost our home and most everything we had in Alaska and moved into my parent's house in Washington state in a backwoods place that I can barely get a job if that. A number of years ago, I received an inheritance-which I asked anyone who would listen for advice on how to invest it. An older gentleman I was talking to at one point along the way (after I had committed the money to my education) said "you should invest in bitcoin" and I laughed him off. That was when it cost $125/BTC. As of right now it appears it will break $10,000 by tomorrow. Quality of life-nooooot so great.

Theres the requested information.

Rough Rider
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Re: ICD Removal

Post by Rough Rider » November 27th, 2017, 7:21 am

Have you considered coal mining?

You need to resolve your cardiomyopathy and atrial wall thinning to determine if you really need an ICD? Second opinion? I can appreciate your frustration level. The powers that be think it better to take a chance that you die at the wheel of a big rig than possibly suffer a split second shock from an icd.

Bitcoin is currently going through the roof. Would have been a good buy. Of course, so would buying some shares of Amazon a few years ago. We always don't get the breaks we deserve. Sounds like lyrics to some song.

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mykidsmom
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Re: ICD Removal

Post by mykidsmom » November 27th, 2017, 7:58 am

I have lupus which caused and is still causing many issues in my life..so when i first got implanted with the icd i was assured id have no issues with the icd itself..WRONG....lupus did not like the implant at all...it tried to push it out..gave it many infections. broke the leads...anything it could do it did..after one particular bad run with it and ending up with a septic infection and lead removal i decided..thats it..no more..next issue with this icd out it comes im sick of it.id had more than 10 surgeries on it in less years....and all its ever done is cause me issues..Until THE christmas of the icd.....it fired more than 22 times all appropriate fires...then i had 5 SCAs within a 24 hr period...all of which i was shocked out of by the ICD..man oh man was i ever happy id not gone marching into the dr demanding they remove it..it saved my life..im here today because of it..and really the issues i had werent to do with the ICD but rather lupus...it sits in my chest....does nothing..cept when its needed to..and then it saves my life...ive a lot to be thankful for...so my advice to anyone considering removal..would be dont..!!!! what harm is it doing you..but if it is needed it will do a lota good for you.

OH and i hate SOB stories...theres stories and then theres sob stories..no point in moaning about what might have been....the hours spent whining cant ever be gotten back....get on with life.... lmao4dx
I think.....Therefore I am.!!!!!

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freckles1880
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Re: ICD Removal

Post by freckles1880 » November 27th, 2017, 8:55 am

First of all I was raised in Alaska so I do understand the area.
You are correct, no commercial license for driving big rigs not airplanes. Very careful with the welding equipment. I would bet that even without the ICD you could not drive a commercial vehicle nor fly. We have several members on here who have also had these issues. They are survivors and even though they have made some major changes, they are still getting along pretty good. Don't dwell on the negatives. Look for what you can do.

wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

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luvmydogs
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Re: ICD Removal

Post by luvmydogs » November 27th, 2017, 9:34 am

Would your wife rather have you here and alive or making more money for a shorter term? Sounds like you needed the ICD but a second doctor's opinion would never hurt. I do understand your frustration on the job front. Will your wife never work again? Can you join a trades union such as carpenter's or pipefitters, etc. You start as an apprentice and work your way up to journeyman. They usually have benefits and retirement programs. Get into concrete. A good finisher is worth quite a bit here in Michigan. May need to supplement income with pizza delivery on Fri or Sat night for a while, but just a thought.
Joanne (aka Jo)

InSync
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Re: ICD Removal

Post by InSync » November 27th, 2017, 11:30 am

All of that sucks. Still, that history of fainting (cause identified or not), cardiomyopathy and that slight ECG abnormality would have put the breaks on a pilot's license anyway......even without the ICD. I don't know about the CDL, but I would think it would require a rigorous physical, as well. It really stinks that you invested money into education and career preparation that you aren't using. But I don't understand how the ICD is the culprit in any of that. Sometimes I feel very betrayed by my body. Life isn't always fair. Sometimes we just have to do hard things. It sucks. And, sometimes we get tired, frustrated, and angry at life.

Don't feel too bad about the lost investment opportunities. For every story of success, there is at least equal failure. My first venture in the late 70s was Litton Industries. There were a lot of ups and downs until the mid 80s when I made an enie menie minee mo choice and ended up with a new offering from an upstart called Microsoft. Then, because life likes to teach lessons, I took a gamble with ENRON. A few months ago, when discussing bitcoin with my early 30s son, he told me that bitcoin was the currency of people who do illegal things online. I'm not sure if that was a challenge or a warning, but I left it alone.

We are all part tragedy and part triumph. Experiencing both is not failure. If something doesn't work, try something else.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

SpruceSniper
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Re: ICD Removal

Post by SpruceSniper » November 27th, 2017, 1:10 pm

haha on the enron choice, yeah we all made that one.

I think light sport aircraft license you can get without SEL 141 which is cool.

the sucky thing with labor trades is I'm a small guy and when I do heavy lifting the area around my implant gets a LOT of pain. enough to keep me from working sometimes.

thanks for the responses guys. I guess when I have some money or health insurance I will look into a second opinion.

also bitcoin is not really that great of a currency for people who want to do illegal things online as it is not as anonymous as some would say-monero or dash would be better suited to anonymity, technologically speaking-its all on a public ledger called the blockchain, a data analyst can sift through a suspect's transactions and bust them-I think.

helluva ride it's taking though.

SpruceSniper
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Re: ICD Removal

Post by SpruceSniper » November 29th, 2017, 12:11 am

So I gave this some thought-I have a clear vocational conflict with this device. What about the idea of just turning it off, and getting the blessing of an EP, with an all-clear to work in a DOT environment? Could an employer be looking at a problem if they denied me a position they would otherwise offer me? I am not sure about a DOT medical card, and the last time I talked to a DOT official, in Alaska, he made it clear that alternatives or any answer other than no was the only agenda on his mind-and that I was wasting HIS time.

beyond that, with labor work, my shoulder with the the implant is in constant pain on a high end level, although I don't know if removing the device, which is sub-pectoral, would return muscle function and if the physical pain would go away.

Thoughts?

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luvmydogs
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Re: ICD Removal

Post by luvmydogs » November 29th, 2017, 9:00 am

Turning it off versus removing it would probably be the better of the two choices. As you already recognize, removing may not make it better at the site. I also have difficulty at the site when lifting over 40 lbs or so. And I would assume you could later turn it back on if you begin having more heart issues.

The thing is you never know when it will save your life. I still think you need it, but hey you could also get cancer at any time too and nothing protects from that. (I know, I've had it)

I would get your doctor's opinion. Most of us consider turning it off when we have something even more serious going on and don't want the defibrillator keeping us alive when things will only get worse. So, this is ultimately your decision. I doubt you're going to find anyone on this site willing to agree with you on just turning it off for better work choices.

I wish you the best in making your decision.
Joanne (aka Jo)

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Re: ICD Removal

Post by InSync » November 29th, 2017, 2:30 pm

I wouldn't think turning it off would help the pain issue. With the cardiomyopathy, do you have a CRT?

SpruceSniper
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Re: ICD Removal

Post by SpruceSniper » November 29th, 2017, 2:35 pm

Oh I'm sure it won't help with the pain issue...however, I have no life with the device in, in terms of work, so turning it off so that I can go to work is the best choice for me. I'm not a junkie, but I'm not a genius, and after putting all my chips into my training, if I can't find work-then I'll be homeless. Indeed I'd be homeless as it were if it weren't for my parents taking me in. I'm simply nailed down-I can't find work. To me it would be better to die and life insurance pay out than to not have a respectable job simply due to this device. I doubt, if, after 14 years of no arrhythmia, no flutter, and no device data download, I really need the device. I was pondering the ramifications of getting work with the device turned off vs removed at this point.

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