New to ICD recommendations

2017 Forum topics and posts

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Mahamohanna
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Joined: November 15th, 2017, 5:55 pm

Re: New to ICD recommendations

Post by Mahamohanna » December 9th, 2017, 9:47 pm

I browsed the ZOLL website and I saw the vest . I don’t think my husband is going to feel comfortable wearing it . I agree CPR is a piece of mind for me , as if I need to do anything in an emergency than at least I can attemp the CPR . The website did not have prices for AEDs? I will ask his cardiologist for his recommendation and see .

I am more at ease now days than last couple of weeks ago ! The risk is there and the appointment not until March ! Thank you

SpruceSniper
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Joined: November 25th, 2017, 10:56 pm

Re: New to ICD recommendations

Post by SpruceSniper » December 11th, 2017, 6:15 am

I'm wondering the same as Mrag. You describe heart attacks, which as I'm aware are different than arrhythmia, as the reason cited by the doc for getting the device. An ICD is a permanent change as well as death. So meds are an option. Be careful that you get as much info as you can. I would have to pull the study up again, but if it's ARVD that he starts talking about, beware. I've read both Johns-Hopkins reports as well as Mayo Clinic reports indicating a second opinion diagnosis resulted in a change of opinion in 3 of 5 and >80% of ARVD cases, respectively. That in mind, we aren't doctors here, just folks with a history, so the bias from us could be misaligned. There is certainly a TON of support the folks here will give you-but be prepared for unconventional demonstration of that, and beware the nature of our advocacy, I personally am very firmly against an ICD unless there are regular, verifiable instances by which life can be preserved through it's presence-that is a real danger to his health as opposed to the device being installed as an insurance policy that may or may not ever be used, but your angle may differ. Good luck, welcome, and feel free to PM me for any questions further.

Mahamohanna
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Re: New to ICD recommendations

Post by Mahamohanna » December 13th, 2017, 9:48 am

No it’s his 32% EF coupled with one 29 second occurrence of VT that causing his EP now to join his cardiologist in recommending the ICD . If you read the post , you could see my husband is very reluctant of having the ICD and his doctors coming on as something recommended not urgent . They keep asking him to make up his mind and agree on what they call long life commitments. My husband did actually survive as I understood at the time in 85 a massive heart attack , undergone a ballooning procedure back than on an emergency basis in one overnight business trip .

I continue to search for a live support group near Washington DC but nothing available . I found another closed group on Facebook living with an ICD but I am reading both very positive and very negative views about living with an ICD . I don’t read the bad or scary one to my husband as I dot want to discourage him . I get confused myself and not sure if he is making the right choice by refusing the ICD or is he wise enough to know what he wants ! It’s really a choice and I support him no matter his choice would be . Our next appointment not until March....until than I pray every day and night for him and for everon else
It’s a great support group

Bryan
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Joined: January 28th, 2016, 5:14 am

Re: New to ICD recommendations

Post by Bryan » December 13th, 2017, 10:31 am

Mahamohanna,

Few of us with ICD's know how hard it is for partners such as yourself living with us; but the choice should be your husbands as you say. All you can do is support his wishes. Informed consent or rejection is not always easy, as the medical profession have their own motivations. Do your own research, and make the choice right for you and your perspectives on life. You have been given the gift of time, till March; use it to work out how you both wish to live going forwards.

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mrag
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Re: New to ICD recommendations

Post by mrag » December 13th, 2017, 8:52 pm

I am not going to be my usual nice self here. Read the following at your own risk.
I am reading both very positive and very negative views about living with an ICD
Let us get something out of the way. "Living with an ICD" just maybe the dumbest sentence in the English language and considering how much comes out of Washington these days, that is saying a lot. You say you can't find a live support group for ICDs. Wonder why that is? It's because no one else gives a hoot. There are about 10,000 (read TEN thousand) ICDs implanted EVERY month and there are something like 800,000 ICDs in the US right now as we chat. And guess what, the are all living with an ICD and with the notable exception of maybe 100 right here that are active on the forum, no one is having any damn problems or they live in Alabama. Now you want to talk about living with cancer, living with Parkinson's, living with Alzheimer,'s living with the embarrassment of psoriasis, then you got some action. But otherwise, stick in the ICD and move on. Yes, there can sometimes be some temporary adjustments necessary. If there are problems, 99.98 % of the time it is because of the underlying condition of the heart that justified getting the ICD in the first place. If there is "success" with having an ICD, it is probably because you see an EP or cardiologist on a more regular basis.

By the way, read up on the survival rates for CPR. And I assume you weigh over 180 lbs and can sing "Stayin' Alive' without musical accompaniment for 20 minutes or more, because if you can't or don't, any CPR you try and perform is going to be highly suspect.

Focus on living today. From everything I've read, ICDs offer very little protection from nuclear explosions.
"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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Re: New to ICD recommendations

Post by ROBO Pop » December 14th, 2017, 12:39 pm

Why anybody, especially someone who wore one, would advocate wearing a zoll life vest is beyond me. That is one miserable piece of crap and would do nothing to encourage your husband to get a defib. Further there is no correlation between the two except the shock.

The majority of people you find at websites like this are those who've had issues with their device, both real and imagined. I can tell you, the vast majority are just a wee bit nuts and many of their issues are in their minds. Look at how few actually join these sites cpmpared to the number of defib implantees...small small percentage.

Look your husband needs to learn all he can about his condition, the risks, and a defibrillator. Then he needs to evaluate the pros and cons and very importantly discuss it with you and family before coming to a decision everyone buys into. Ultimately it's his decision but he should choose wisely. We can preach and convey our beliefs but ultimately he's got to decide what is the best path for you. Good luck
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

doogie55
Posts: 22
Joined: July 10th, 2015, 6:41 pm

Re: New to ICD recommendations

Post by doogie55 » December 14th, 2017, 6:06 pm

ROBO Pop wrote:
December 14th, 2017, 12:39 pm
Why anybody, especially someone who wore one, would advocate wearing a zoll life vest is beyond me. That is one miserable piece of crap and would do nothing to encourage your husband to get a defib. Further there is no correlation between the two except the shock.
Maybe I'm missing Robo's subtle irony (& it wouldn't be the first time for me), but I've gotta say this: I hated my Zoll life vest and was just about to consider not wearing it any more, but then a few days later I went into vfib and it apparently saved my life. The Zoll folks would gladly have made me a poster child, but modesty and the enormity of the event prevented me from taking up their offer. So I have to admit that they serve a useful purpose in those weeks or months before a decision is made on whether an ICD is needed or not. You never know if you'll be one of those at-risk individuals who actually has a fibrillation episode.

Doug E.

InSync
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Re: New to ICD recommendations

Post by InSync » December 15th, 2017, 12:26 am

I woke up this morning. That is the one reason I would advocate for wearing a LifeVest if it was recommended. I didn't find it especially uncomfortable, but did find it loud and messy when it fired.

Mahamohanna, I didn't suggest you check out the vest for your husband, I suggested you check it out for you, for your peace of mind. If the doc isn't expressing urgency, I would be encouraged. When the vest was recommended for me, my EF was <20, my left ventricle was so dilated that my heart looked round like a ball instead of heart shaped, it was so enlarged that when I leaned back in a chair I could feel it floundering around against my back, and I was recovering from an infection that had caused tamponade to begin and my right atrium had collapsed. At my first cardio visit, the doc recommended the vest and wanted me to wait in his office until the rep brought one for me. I thought he was going to tackle me and strap me to the exam table when I told him I was going to leave and think about it. I would be very encouraged that your husband's doc isn't expressing urgency. I don't have any idea about an AED, but the agreement with I signed when I got my vest stated it would cost $30,000 if it was not returned after I quit wearing it. It is rented from Zoll and insurance generally covers the monthly rental.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

blueraider
Posts: 48
Joined: May 20th, 2013, 6:15 pm

Re: New to ICD recommendations

Post by blueraider » December 27th, 2017, 9:28 pm

As you’ve had issues finding a local support group, I’d suggest he make an appointment with a therapist or counselor to discuss and be fully aware of his issues regarding and ICD. That may help him see the his feelings in a new light. He either chooses to get one or not, but he needs to accept his decision and go with it...no ICD, move on with his retireme/life and enjoy....decide for the ICD, make an appointment and get it done.

I would also suggest you speak with someone because you need to be okay with his choice. You can be prepared to do CPR, but how many times is he not with you..you’ve both got to have some discussion....you want him to be healthy and happy and him being on the fence about this clearly is causing you as much anxiety as him...

Just My thoughts. I have the type EP that’s believes everyone needs an ICD. -that and beta blockers...I had mine implanted and refuse to look back or second guess my decision. It’s peace of mind for me and my wife.

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