New to ICD recommendations

2017 Forum topics and posts

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DebW
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Re: New to ICD recommendations

Post by DebW » December 1st, 2017, 8:47 am

I am sorry it didn't go well Maha. At least he agreed to have it done in March? I will be sending good thoughts and prayers you way.
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luvmydogs
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Re: New to ICD recommendations

Post by luvmydogs » December 1st, 2017, 10:17 am

Getting an ICD does take more thought than you'd think. I am 47 and spent a month or so thinking about it before I agreed to do it. And my main motivator was my son telling me I couldn't die yet because I hadn't met my grandkids (they're not even pregnant). I hope I don't upset you, but I'm going to play the other side of the coin here. If it truly scares your husband that much, I would let it go for now. As you noticed, the stress of the decision can cause an SCA by itself and the surgery is not without at least minimal risk either. In all honesty, I'm not sure I would want to have it done at age 78. We are all going to die, it is fact. And some of us hope that when it's our time, we do go by SCA. It sometimes comes to a decision about quality over quantity and he may be struggling with those thoughts. You are wonderful for being there for him! I hope you can be at peace with whatever decision is made.
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TruckerRon
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Re: New to ICD recommendations

Post by TruckerRon » December 1st, 2017, 10:27 am

I didn't have much of a choice to make regarding my CRT-D: Get it or be prepared to have another SCA (or SCD!) the next time my heart threw a bad rhythm.

I wonder if your husband's fear is just one of having any sort of surgery. Or is it a fear of having an object implanted in his chest? (Given how many people you know who already have pacemakers that may seem surprising.) It may also be the fear of being shocked by it. But until he identifies the source of his fear, no matter what it is, he won't be ready to discuss it rationally.
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Non-ischemic cardiomyopathy
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Mahamohanna
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Re: New to ICD recommendations

Post by Mahamohanna » December 1st, 2017, 11:03 am

No Deb he agreed to schedule it to be done in March but I quickly decided to cancel the appointment for now as he was about to explode ! And I thank you guys for your feedback it is right on . It’s the quality of life versus quantity and he is very thankful for the life he had up to this 3 beautiful daughters and 8 grandkids! My husband and I met when I was 16 and he is my lover , life and my best friend ! I have to respect his wishe right now even it hurt me to know that something like that could save his life one day ! He is a very religious man too and believes when the day comes nothing can save you. It’s a long struggle but for now he is being monitored and his EP sending a private email asking me to relax and give him time to digest !
Thank you all ...your feedback help me great deal . I am so scared I am going for a CPR training tomorrow

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Re: New to ICD recommendations

Post by ROBO Pop » December 1st, 2017, 11:08 am

Reminds me of my meeting with SynCardia to discuss getting an artificial heart transplant...if they were trying to convince me to get one, they said all of the wrong things.

Not all medical professionals passed Bedside Manner 100 in college. Some of the things I've heard first hand makes one wonder.

The FACT is your husband is at increased risk of Sudden Cardiac Arrest and that risk is just as high today as out in March. There is absolutely no way to predict when or if an SCA will strike. That day won't be on hold while he thinks it over either.

Look around this site at the people who had an SCA before they got a defibrillator, they are thelucky few. Only 8 to 20% survive an episode. Even though these guys survived, it should be obvious they suffered severe brain damage.

A lifetime commitment - cripes at 75 what the hell does that mean. Most people get on with life and stop worrying once they have a device. You go in for a quick change out once every 5 - 10 years and spend 1/2 hour getting it checked at the dr office periodically.

It is also true that most people who get a defibrillator never experience a shock but one doesn't know until it happens.

So why isn't the EP expressing more urgency, well I have no idea but then he ain't the one who'll die if the worst happens is he?
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Mahamohanna
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Re: New to ICD recommendations

Post by Mahamohanna » December 1st, 2017, 11:32 am

Yes I have no idea why his EP even agreed to wait until March ? That is exactly what my husband is struggling with and why keep asking him to make the decision and a lifetime commitment which we don’t even know what is that ? Hmmmmm
My husband like I said obviously does not trust the opinion and he is not scared to die either like he once said if he will agree it’s just for me but holding me responsible for all the risk and any complications that may follow . It’s not a good feeling or place to be ...oh well ...thanks again as just talking about it with this group is giving me strength and a relief

Leedur
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Re: New to ICD recommendations

Post by Leedur » December 1st, 2017, 12:10 pm

@Mahamohanna: Four years ago and after 3 what I would describe as "One Second Blackouts", I wore a monitor for 24 hours and it was determined I had V-tac and likely to suffer Cardiac Arrest. Five days later the ICD was implanted at age 65. I continue to live as normal, go to gym, work, etc. with no problems. After a while, I began to question that I really needed the device......until 15 months later it saved me while driving.

My original disbelief about the need for such a device quickly gave way to deciding to trust my cardiologist of 16 years recommendation. Good thing I did. The shock event was not really painful and over before I realized what happened. Hope you two make the right decision.

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Re: New to ICD recommendations

Post by Stella Blue » December 2nd, 2017, 2:20 am

I'm a bit like Leedur. I didn't have blackouts, but I wasn't feeling well and had trouble climbing stairs and hills. The doctors found my heart was very enlarged and I found myself suddenly in hospital instead of attending a Christmas party. I received a CRT-D (pacemaker plus ICD) about three weeks later and went back to work more or less as usual a week after that. I started feeling normal again pretty quickly, so it was a complete shock (no pun intended) when I passed out while speaking with a colleague on the phone one afternoon about a year later. I decided to pretend it hadn't happened, but my doctor received a call from the ICD manufacturer and it was confirmed I had received an appropriate intervention (shock). It's never happened again and I have had my ICD for almost six years now, but if I hadn't had it that one afternoon, I surely wouldn't be here. I kept reading on this site that people get used to the ICD over time and forget it's even there. It took me probably a couple of years to get to that point, but that's where I am today - not thinking about it much at all but deeply grateful when I do remember it. I hesitate to say that getting an ICD is not a big deal, as it obviously is, but when compared to the potential alternative, it's a cakewalk.

Good luck, Stella Blue

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ROBO Pop
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Re: New to ICD recommendations

Post by ROBO Pop » December 7th, 2017, 10:17 am

Mahamohanna, we haven't heard from you, just wondering how your husband is doing emotionally since things have quieted a bit.

I would stress to you both the benefits of speaking with those who've gone before and getting a grasp of what it,really means to have a defibrillator. He's always welcome to visit us here and chat with members or perhaps join a Mended Hearts support group.

If he's still uncertain he could always see another EP and get a second opinion.

Stay in touch, we're here. Well some of us aren't here mentally but...
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Mahamohanna
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Re: New to ICD recommendations

Post by Mahamohanna » December 7th, 2017, 9:43 pm

Thanks for asking RoBo....very quite is the situation these days . My husband is very calm as he decided to wait and see at least until early March when we come back from a prior travel arrangement hmmmmm! ! He definitely knows his risk Of havin SCA at any time , did I ever mention my husband is a retired veterinarian! So he knows ! He said he has been living with his 32% EF for over 30 years since his heart attack with that risk . One occurrence 2 month ago during the last 4 years since he implanted the loop recorder ( for a completely different reason ) does not makes him scared to jump and make such a along time commitments for ICD . His EP emailed me and wrote (it is easy for the doctors to make the recommendation and the others to see the bigger picture, it is quite straight forward. but as a patient, it is a life long commitment + the short term risk + discomfort. Let him digest more )

I asked the EP for a support group recommendation and I received this email from him (maha , unfortunately, there is no ICD support group any more. 15 or 20 years ago, there was one at Fairfax Hospital. We took turns to give talks then. Nowadays, the ICD is very routine, well accepted, and a lot of people have it. So, there is no need for such a group any more. I asked several people in Fairfax Hospital today, and no one knows a support group for ICD . I did found one online, but have no experience with it ,http://www.icdsupportgroup.org/) his EP is a great guy well respected .

So as you can see , I continue to stress out and I even went couple of days ago and took a CPR/ AED training in case my god something happened to my husband and we are alone ! I will continue to search for the live group ! As for me , too stressed , not sleeping well and feels my hands are tights! I read the posts daily as it give me great strength......you are all hero’s and real fitters ...God Bless all of you !



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DebW
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Re: New to ICD recommendations

Post by DebW » December 7th, 2017, 10:19 pm

Sending good thoughts and prayers Maha. It is a great thing that you took the CPR class. That will give you piece of mind. I hope that you find a live class for you to take. But, this support group will help you for sure. You can always vent to us
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freckles1880
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Re: New to ICD recommendations

Post by freckles1880 » December 8th, 2017, 9:14 am

Unfortunately there seems to be very few "local" support groups for those with ICDs. We get many requests for a local one is someones area but they are not there. We had one in Denver about 7 years ago sponsored by our cardiologists and hospital. It stopped about the time I was still learning about my ICD. They did recommend this site though.
I think the issue is that it is hard to get someone to be in charge and keep the meetings going.

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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

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InSync
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Re: New to ICD recommendations

Post by InSync » December 8th, 2017, 10:46 am

ICD and lead placement has become quite common and very safe. After the 6 week post op recovery, you don't even know the hardware is there unless you get shocked. It won't inhibit him physically.

What I would consider....32% EF is low, but not extremely low. Our bodies have an amazing capacity to compensate and you can still live a reasonably active, fulfilling life with an EF of 32. It seems he is doing so now and has for a long time. If I follow correctly, he had one instance of VT for 29 seconds during monitoring with the loop recorder. While any abnormal rhythm is a danger sign, 29 seconds is not an especially long episode. I suspect these are some of the reasons his EP is not expressing more urgency. I realize it only takes one VT turning into VF to kill you, but if average Joe on the street was hooked to a continuous monitor, they would also likely have instances of abnormality, as well......but they don't all go on to die from it. Heart function naturally decreases and becomes more abnormal as we age. The EF and VT might play more into my decision if I was 60, but I'm not sure they would be as significant to me at 78. Still, if he chooses to have the implant, know that the surgery and recovery were the easiest and fastest of any I've had for any other reason.

His heart seems to have been pretty stable for a long time. It is likely to remain so until March. Enjoy your trip!
Dilated Cardiomyopathy, LBBB, CHF
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The beat goes on.....

Mahamohanna
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Re: New to ICD recommendations

Post by Mahamohanna » December 8th, 2017, 6:49 pm

This is a very nice reply and right on analysis of my husband situation ! Thanks for summarizing it that way and as I read it , it gives me hope and the strength to go on praying perhaps it’s ok to wait and see for a little longer and until his next appointment in early March . My husband is being monitored 24/7 and the clinic do calls if they see any abnormalities .my husband told his EP he vaguely remembered feeling the 29 VT episode came and gone very quickly !

I have a question to ask , now I got certified and trained for CPR/ AED , should I consider purchasing an external defibrillator should god forbid something happened? ....when I asked that question in the training , the instructor replied it’s expensive and if you are that much concerned about someone in your household , he or she should go for an ICD ?....hmmmmmm I guess I know that ..... thanks all

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Re: New to ICD recommendations

Post by InSync » December 8th, 2017, 9:57 pm

I think it's great that you took the CPR class. It probably gave you a sense of control and the feeling that you are doing something positive. That is really important when the world seems to be spinning out of control and you feel helpless to stop it.

About the AED....Just remember that CPR isn't always successful....even when performed by experienced professionals. Sometimes, even external defibrillation isn't successful, not even in a hospital with experienced physicians. Sometimes, even the ICD can't prevent SCD. Reasonable precautions are good, but anything beyond that, it might actually add more anxiety. If you are stressed to the point that you are preoccupied and your quality of life is impaired by anxiety, you might check out an external defibrillator. Zoll makes one that you wear called a LifeVest. I wore one for 4 months prior to implant. It might be helpful to consider talking to the doc about.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

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