ICD Removal

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SpruceSniper
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Re: ICD Removal

Post by SpruceSniper » November 29th, 2017, 4:57 pm

CRT? Cardiac Rehab Therapist? If so, no.

InSync
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Re: ICD Removal

Post by InSync » November 29th, 2017, 9:55 pm

Cardiac resynchronization therapy. The CRT device has 3 leads, the third used to make the ventricles beat together. CRT use is common with some types of cardiomyopathy and with heart failure. How many leads does your device have?

You might want to give it a trial run. Have it turned off and see how it goes and how you react emotionally before removing it. See if it makes the difference you thought it might. If I knew the risks and rewards, which you seem to, and was certain that I would rather live with the risk than with the device, and was making the choice of removal or turning it off, I would remove it. If I was going to chose to remove it, I would remove the device and the lead(s). I wouldn't want them sitting dormant in my body long term. I'm not sure how long an inactive device has been implanted in someone, but would think that eventually it would deteriorate in some way.

Before making the choice, though, I would make sure I understood the distinction between the limitations of the device and the limitations of the heart issues. It would be unfortunate to remove it and find that your heart condition would still impact your career choice. Have you discussed the pain with your doctor? I know you said you don't have insurance and employment now, but you do have options. Have you let your doctor know that you don't have insurance or employment? If the doc can't help, try the device manufacturer. They have a vested interest in your implant, too. Your current circumstances aren't permanent, though it might feel like it. It is generally best not to make a major decision in the middle of a crisis moment.
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 30th, 2017, 2:01 am

InSync wrote:
November 29th, 2017, 9:55 pm
Cardiac resynchronization therapy. The CRT device has 3 leads, the third used to make the ventricles beat together. CRT use is common with some types of cardiomyopathy and with heart failure. How many leads does your device have?

You might want to give it a trial run. Have it turned off and see how it goes and how you react emotionally before removing it. See if it makes the difference you thought it might. If I knew the risks and rewards, which you seem to, and was certain that I would rather live with the risk than with the device, and was making the choice of removal or turning it off, I would remove it. If I was going to chose to remove it, I would remove the device and the lead(s). I wouldn't want them sitting dormant in my body long term. I'm not sure how long an inactive device has been implanted in someone, but would think that eventually it would deteriorate in some way.

Before making the choice, though, I would make sure I understood the distinction between the limitations of the device and the limitations of the heart issues. It would be unfortunate to remove it and find that your heart condition would still impact your career choice. Have you discussed the pain with your doctor? I know you said you don't have insurance and employment now, but you do have options. Have you let your doctor know that you don't have insurance or employment? If the doc can't help, try the device manufacturer. They have a vested interest in your implant, too. Your current circumstances aren't permanent, though it might feel like it. It is generally best not to make a major decision in the middle of a crisis moment.


FINALLY, THANK YOU. An answer which speaks directly to my circumstances. I was beginning to lose hope I'd find that here. I entirely understand many of the others' comments of how it's ill-advised to be on the track I've been, I didn't just recently get emotional and decide to "look into it"-to the contrary, I've been convinced for many many years I have no heart issue, and want the device removed. This has come after very methodical, careful observation, reading, and experimentation. I can't say I'm in a crisis moment but a crisis life. That said-I don't know how many leads my device has, I have St Jude Model number CD1311-36 single chamber RV. 1582/60. The website indicates nothing but the Jules I'm taking if I get hit-36 I didn't know it was 750 friggin volts...

From a philosophical standpoint, I feel the same way-I want all of it out if any of it out. The EP who put it in told me if I leave the leads in place, I run the risk of them being conductors in the case my body serves as a path-to-ground electrocution scenario (even low voltage) and if the leads conduct, that can create some havoc for my heart.

The new EP I'm trying to talk to says cost can run into the tens of thousands of dollars for removal. (I got an estimate of 14K in Alaska, so I'd think in the lower 48 price would be lower) I like your idea of speaking to the device manufacturer. Maybe I can sell it back to them less the cost of refurb'ing it with the battery. Hell, I may even be able to cut a profit!

Leaving the leads in, to me is a very undesirable scenario. The leads I have are getting to be close to 13 years old I think...not 100% sure. I have heard from the nurse that pulling the leads from my heart could run the risk of killing me. I really would like them out...especially if they present the risk of electricity conduction in an accident scenario, but I was told I had a 20% chance of dying when pulling the leads. That was Laurie Racenet that told me that, at Alaska Heart Institute.

I suppose I haven't thrown all my information out there so I can understand the general consensus thus-far that has been for me to keep the thing...however, I suppose not everyone is given the benefit of the doubt for possession of intelligence in disposition and an objective point of view. That said, I do understand the device limitations and my heart's limitations. Early on, I highly doubted the diagnosis, and my family and I all firmly believe we were told I had ARVD. The EP claimed on the phone recently that "we never said that" and I just had risky cardiomyopathy. Also, he brought up a prior incident in which I used cocaine, and assumed I was "just a junkie" and said "your cocaine use could have contributed to this situation"...however, I pointed out to him I had never used cocaine until AFTER the implant. (stupid right? i was 22 so sue me). Anyhow, I would climb mountains up to 5000ft, then after the 12 hour climb, I would sprint at top speed for the last 1/4 mile of the trail. I played aggressive badminton-all to test my theory that if I had such a deadly heart condition, then at least I had coverage, if I had a SVT/syncope/arrhythmia. never a thing. nothing happened but for me to get very fit, lose a little weight, and lower my Blood pressure and resting heart rate. In other words-the regular health benefits of cardio workout. And that asshat doctor told me I would basically have to live a sedentary life the rest of my days. #*#*# him. (had to get that out) The device, mind you was something of a burden, and with several years and no alerts on the printout, the guys at the clinic finally said we will said it up so that you have to have a BPM of 240, afib and detectable arrhythmia, basically up the creek, before the firing threshold would be reached. I think they realized early on they made a mistake and have been covering their asses for years.

So the differentiation between the limits of the device and of my heart is, I feel, clearly understood, observed, and accounted for.

the real fear I have is the idea of the lead extraction. If I have to go in and get killed on the slab, I don't really have anything to lose at this point-because of this device, I have no revenue-and as for what I can do now....well I won't lie about it's presence to an employer...I live in a town for retirees, and I've considered working as a caterer before, it's not difficult labor wise, but having a menu portfolio ready is very important. I've considered that before. But alas, right now I am at a loggerheads in that I have a serious drive over to Seattle just to see the doc. more in time....

SpruceSniper
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Re: ICD Removal

Post by SpruceSniper » November 30th, 2017, 2:03 am

judging from a picture of my device, it appears to be a 2 lead.

SpruceSniper
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Re: ICD Removal

Post by SpruceSniper » November 30th, 2017, 2:19 am

Well I guess we will see what St Jude Medical will say-I offered to sell it back to them as I own it free-and clear without debt. I suspect refurbish and resale in India or Mexico possibly would be the best repurpose of the device.

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luvmydogs
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Re: ICD Removal

Post by luvmydogs » November 30th, 2017, 10:16 am

Okay, SpruceSniper, you've swayed me to your way of thinking. I admire your desire to improve your life and be an active member of society. Some things are worse than death, such as the long term feeling of desperation. So, if you simply turned the ICD off for now (which would also be more cost effective at present), would you be able to get the job you want? Or would just having the device in your body be a no go still? Then later, when you have health insurance and stuff, maybe have the device and leads removed if you still desire?
Joanne (aka Jo)

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mykidsmom
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Re: ICD Removal

Post by mykidsmom » November 30th, 2017, 12:27 pm

I think sometimes......the universe just plays with us..

when i had the cardiac arrest that resulted in the ICD implant....i was after the arrest in the induced coma on ice for a week or so...they warned the family my chances of coming thro this without some kind of brain damage was very slim...

well it didnt look like i suffered any for a while....till i realized....i could not retain numbers of any description or for any reason....not even my phone number.....what was my profession ????? Im an accountant.....ok was an accountant..I think the gods laughed about that one...two weeks ago in a drs office someone asked for my phone number and for the first time since i got the implant (many years ago) i rattled off my phone number without even thinking.....huge achievement...i did a happy dance

Is there anything else you can do work wise??? can you obtain funding for retraining????
I think.....Therefore I am.!!!!!

SpruceSniper
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Re: ICD Removal

Post by SpruceSniper » November 30th, 2017, 4:17 pm

in response to kids mom and dogs...

retraining is a possibility. at the present time turning off the device may be the best alternative to removal IF I can gain an EP's blessing that the heart condition doesn't exist.

throwing boxes is extremely painful for me, even doing it for a few hours...again, the device limits the kind of work I can do. Unfortunately, I have yet to discover that perfect office job, and as an active male with high metabolism, I think I would be best served mentally and physically to work standing up.

thank you for the kind words dogs, alot of head scratching going on over on my end here.

St Jude said they won't buy back a used ICD, (likely not legally allowed to say that in the USA)) however I read an article last night saying the FDA doesn't have any laws in place that contend with this sort of situation, as well as another article from a case study in India, in which ICDs were re-used with success.

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TruckerRon
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Re: ICD Removal

Post by TruckerRon » November 30th, 2017, 11:40 pm

Getting a CDL and DOT medical card for interstate driving is out of the question if you've ever had an episode of syncope (loss of consciousness due to drop in blood pressure). OTOH, some states will allow you to drive intrastate (strictly within that state's boundaries) -- you just have to find a company that will sign you on... good luck with that!
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

SpruceSniper
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Re: ICD Removal

Post by SpruceSniper » December 1st, 2017, 3:49 am

TruckerRon wrote:
November 30th, 2017, 11:40 pm
Getting a CDL and DOT medical card for interstate driving is out of the question if you've ever had an episode of syncope (loss of consciousness due to drop in blood pressure). OTOH, some states will allow you to drive intrastate (strictly within that state's boundaries) -- you just have to find a company that will sign you on... good luck with that!
Yes I worked for a place called Weaver Bros Trucking in Anchorage, AK. They knew and hired me on, the pain was the DOT was headed up by just ONE guy in Anchorage-and he made it clear he wouldn't talk to me about intrastate as that was all I'd need to do-regardless of no symptoms and no device firings. He was a total jerk. I'm in Washington now so maybe it's different here. Honestly I'm screwed until I can figure out which way is up.

InSync
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Re: ICD Removal

Post by InSync » December 1st, 2017, 9:46 am

Your lead appears to be a Riata, which had a Class I recall a number of years ago. Has that been mentioned by your doc or St. Jude? Are you getting regular interrogations?

Meanwhile......if you ever need an appropriate shock, you'll be happy with those joules.
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 » December 1st, 2017, 5:21 pm

Yes it is a Riata lead, had the flouroscopy done and no problems I was told. No regular interrogation. I've been basically tossed aside because I have never been able to afford the exhorbidant fees at the Alaska Heart Clinic. They've treated me as sub-human. Since I don't have the money, they don't check on me. I've gone years without even a basic interrogation. The Nurse for my prior EP, Zona, when I said I didn't have health insurance responded in an irritated, condescending voice "why not!?" I wanted to say because you people ruined my life and all chance of getting a job that would pay for health benefits and a place to live at the same time, but I don't have that fight in me. I'm starting to get a fight in me though.

InSync
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Re: ICD Removal

Post by InSync » December 1st, 2017, 7:11 pm

St. Jude has to follow the lead. They have responsibility to you. If they aren't interested an attorney might be. Particularly when you detail the stress the dangerous lead is posing to you. Probably so severe that it is impacting your quality of life, ability to work, inability to sleep due to the anxiety, etc.
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 » December 2nd, 2017, 7:58 am

InSync wrote:
December 1st, 2017, 7:11 pm
St. Jude has to follow the lead. They have responsibility to you. If they aren't interested an attorney might be. Particularly when you detail the stress the dangerous lead is posing to you. Probably so severe that it is impacting your quality of life, ability to work, inability to sleep due to the anxiety, etc.
I am having trouble-"follow the lead". St. Jude has to keep track of the lead even if it's a riata product?

If I had the money to pay a lawyer, I would have sued the living hell out of the doctor years ago. I hear from family, however who has been through litigation and health issues aplenty, that malpractice lawsuits are very very difficult for the petitioner to win.

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Re: ICD Removal

Post by InSync » December 2nd, 2017, 11:14 pm

Yes, St. Jude/Abbott is responsible for your lead. They should be monitoring it. Typically through your doctor, but it seems you haven't seen one in a while. I would have that conversation with them. At least ask for a remote download to check lead integrity. Which leads (pun intended) to a couple of questions. Did I miss something in your story, or is this your original device? Has it been implanted for 14 years? When was last interrogation? If it has been implanted 14 years, do you even know if it is still active?
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

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