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New to ICD recommendations

Posted: November 19th, 2017, 9:16 am
by Mahamohanna
My husband is a heart patient and his cardiologist have been recommending to put ICD for a number of years but he refuses and Scared!he had a heart attack in 1985 and been living with a week heart 32%
recently he also started to develop up normal arythmia VT and once again now his Rythem doctor is recommending the ICD..they saw the signature on his implanted loop recorder he put in 4 yeRs ago due to a mini stroke , they were looking for AFib but they never confirmed ..my husband still very much against it ! I wonder if there is a support group that meet in person? We live in Oakton Virginia close to D.C. Perhaps he can ask questions and get to see real people with ICD experiences. He is not an internet guy and will not research anything ...I am very concerned

Re: New to ICD recommendations

Posted: November 19th, 2017, 9:28 am
by freckles1880
howdywelcome for you and your husband. I am not aware of any support groups in your area. I suggest you contact the local hospitals and your cardiologist to see if there is something.
There are very few active groups in the USA. That is one reason we are here. A support group from all over the world.

Pleased do read some of our posts and topics. You will find that he is not alone. Most of us had issues at the beginning as we did not know what to expect. Bottom line today is that ,as quoted from one of our members, " The ICD will help assure you remain alive. Staying alive can dramatically improve your chances on eventually improving the condition of your heart."

wavhi

Re: New to ICD recommendations

Posted: November 19th, 2017, 9:36 am
by Mahamohanna
Thank you Bob! I know what you mean and while trying to help my husband makes the desicion to put in the ICD , I am also scared about attaching the wire to his weak heart ! I think the problem he has time to think about it and he is not sure why he is taking the risk ? He keeps thinking it is going to add new problems while for now he is living without discomfort! I know it's a difficult situation but I know he is living with a very high risk

Re: New to ICD recommendations

Posted: November 19th, 2017, 12:10 pm
by mrag
Mahamohanna wrote:Thank you and you are right on ! His heart is weak only 30% due to a previous heart attack in 85 when he was only 45 years old .
He has been living like this for over 30 years.....few years ago his cardiologist start talking about the ICD to protect him without seeking any issues .four years ago my husband suffered a mini strok and the doctor recommended to implants a loop recorder to monitor and look for a possible AFib to prevent a bigger stroke .
First, doctors are pretty reasonable about taking reasonable risks. If they were really worried that implanting an ICD might create new or bigger issues, they probably wouldn't even suggest one. Have you or your husband ever had a cap or crown put on a tooth? I like to think of an ICD as a very sophisticated, very expensive crown. It too is implanted in your body and saves your tooth from cracking and ruining your day. Once in, you never know it's there. An ICD is almost like that. Yes, there can be some issues that pop up, but for the most part and for most people, they are easy to live with. They are protection. ICDs do not fix heart problem.

Newer versions of an ICD called a CRT can sometimes actually help the heart by re-synchronizing the internal chambers. Something to ask your doctor and or your second opinion doctor. Where do you live, do you have a GOOD EP (electrophysiologist) to do the implant? It is a "simple" procedure, but it's the heart and your husband is old (sorry about that) and it pays to use the best (not necessarily the nicest) doctor. EPs specialize in ICDs, etc.

Not to be maudlin or controversial, but if I calculate right, your husband is about 75 and in 'OK' health (not good, but not bad). I can tell you if I was 60, I wouldn't hesitate to get an ICD. If I was 85, I would never have one. Everybody has different numbers, but you might want to give that a thought.

Re: New to ICD recommendations

Posted: November 19th, 2017, 12:45 pm
by DebW
Welcome Maha!!!
Deciding on an ICD is a hard decision, especailly when you have a lot of time to think about it. If you could convince him to read some of the posts on here, that might be a good thing.
:big-hug: :big-hug: :big-hug: howdywelcome

Re: New to ICD recommendations

Posted: November 19th, 2017, 6:08 pm
by dick
Mahamohanna....you should contact some local hospitals and see if they have any support groups. You should also read some posts posted here. See, doesn't that make you feel better?

I am not sure what the decision problem is. Don't get the ICD, you might die in the near future. Do get the ICD, you won't die of SCA in the near or distant future.

Most people do not know this and even less want to acknowledge it, but we all eventually die of something. Ask your doctor what he (or she because it's critical we be fair now more than ever before) would like to die from. Ask what selections an ICD eliminates.

There may be a few here that will object to that question. Ignore them. If they bring up some god thing (which is not political), write down their user name because you will need to totally ignore them in the future.

Re: New to ICD recommendations

Posted: November 19th, 2017, 8:53 pm
by Mahamohanna
My husband just turned 78 years old . He had his heart attack in 85 when he was just 45 . We live in Northern Virginia close to D.C. Both of his doctors for the past 15 years a cardiologist and EP belong to Virginia Hearts . My husband also suffers from Asthma . We both are active ! . I have been reading your comments to him so he may starts to may be accept the ICD idea . His EP gave him a demonstration model that seem to be fairly big and asked him to read the ICD patients guide . We have a follow up appointment next week to understand how serious is his new VT that they picked up on the monitor last month . I am still wondering about living with the ICD if he ever implanted one . I will keep reading comments as I thank you it gave strength

Re: New to ICD recommendations

Posted: November 19th, 2017, 9:51 pm
by dick
Our leader here is a dude named Freckles1880. I cannot speak for him and mostly I consider him a jerk. However, he is a great jerk and someone I really admire although I would not want that known. There is one, among many, threads regarding him that can be seen at: viewtopic.php?f=24&t=15189

So what is it exactly that you and your doctor and he want done? What's your goal at the end of the day? An ICD in most cases (states) can have the "life saving" defibrillator turned off at any time. If that's the case, why wouldn't you have the ICD implanted now?

The ICD is NOT the problem, the heart condition is. Keep that in mind.

Re: New to ICD recommendations

Posted: November 20th, 2017, 12:05 pm
by Mahamohanna
What an inspiration group of people ! I read the post and our prayers are with you all specially Bob ! God is with you !
Just to answer the questions, the cardiologist and the EP wants my husband to consider putting the ICD sooner than later . My husband does not want the ICD and I don't know why . On one hand he is scared of adding complications and making a life time commitment to have the ICD . He is not at any discomfort and greatful for what he has . Me ?? I want him to decide to put the ICD as I know some day it may end up saving his life but I don't want to force him to do it without his acceptance. I know my husband will listen to me if I insist , he trust my opinion over his doctors . I love my husband and I will do anything to help him.
God! Our prayers with all of you . God bless

Re: New to ICD recommendations

Posted: November 20th, 2017, 1:47 pm
by mrag
Husband 78? Tough to teach an old dog new tricks.

It's his body, he should make his own choices. Have you asked him how long he wants to live? Besides you, does he have any other reasons to stay around? I'd say like seeing a new President sworn in, but that might be misinterpreted and might not even be that far away. But something like that.

I really like my dentistry example for getting an ICD. Does he still go to a dentist? If the dentist said he needed a filling, a crown or a cleaning, would he say "no, not interested" ?
--------------------
Today's ICDs should last about 14 years. He'd be 92 by the time replacement became a topic. How old is your car or do you just use Uber?

If he gets the ICD and it doesn't do anything, he will forever have the opportunity of telling you "I told you so." That should be worth something.

Re: New to ICD recommendations

Posted: November 22nd, 2017, 9:12 am
by Mahamohanna
Thank you all and happy thanksgiving!
My husband continues in silence soul searching until his next appointment on Tuesday ! I continue to read and get educated about the ICD and life thereafter ! He has all the good reason to want to live but I think he still wondering if nothing broken why fix it !
I have a question to ask the group ? What is the difference between a traditional ICD and the S ICD ? I read the later don't get net to put the wire inside the heart and I believe that what scares my husband the most . We will follow up next week and learn more about his medical situation as well as the device itself ......

Re: New to ICD recommendations

Posted: November 22nd, 2017, 9:54 am
by dick
The S-ICD is a newer device implanted under the skin and installed outside the heart. As I understand it, it only shocks. It can't pace and has limited adjustment settings. It has a narrow application window meaning only a select group of patients get any real benefit. My guess is the doctors are going to really recommend a CRT-d and not an ICD. The CRT might improve your husband's heart function, an ICD will not, it is preventative.

If he's really concerned you have a third operation, no implant required and he could get it done Friday. A vest. It is what it sounds like. You wear it all the time as in all the time, everywhere.

In addition to reading about ICDs, you might want to research SCAs. Sudden Cardiac Arrests. That's the real reason why doctors are suggesting an implanted device for your husband.
if nothing broken why fix it !
The problem with a poorly functioning heart is on the next "break" it's unlikely there will be any opportunity or need to fix anything. Sort of a permanent "you break it, you bought it."

Re: New to ICD recommendations

Posted: November 22nd, 2017, 10:14 am
by mrag
Does your husband still drive? In some places, if you have an ICD and get a shock, you lose your driving rights for up to 6 months. And it may not matter if the shock was legitimate or not. There may also be rules limiting driving immediately following implant. Some people here have had big concerns over driving. Maybe something to ask your doc.

Before you point out, someone driving with an ICD is probably much safer than someone driving that still needs an ICD is not one of those arguments the mental political giants care to hear.

At 78, it is a trickier decision than one might think. Reread the posts in this thread.

Re: New to ICD recommendations

Posted: November 22nd, 2017, 2:46 pm
by ROBO Pop
I'm going to give this one final attempt at posting.
First welcome to the home for wayward hearts, we're glad the two of you joined us. As you can tell by reading replies, having a defibrillator does not help with mental issues so try to overlook some of the stuff.

There is a national organization of heart patients who have chapters all over the US and meet monthly. It is strictly comprised of heart patients and their care takers and is for peer to peer support. The organization is Mended Hearts and you can find a group near you at their web site www.mendedhearts.org. They are not all ICD patients but most assuredly there will be a few in the group.

Now as for the device, with a low Ejection Fraction (EF) of 32, your husband is at increased risk of SCA (sudden cardiac arrest). Couple that with a diagnosis of Ventricular Tachycardia (VT or V-Tach) which simply means fast heart beat and that risk increases even further. What happens is that fast heart can go out of control and go into VFibrillation which is where the heart beats so it quivers and stops actually pumping blood. Within seconds you go into SCA. Very few people survive an SCA episode without immediate intervention of something like an ICD.

They implant thousands of ICDs every year and have really gotten it down but still it is not without risk and should not be taken lightly. You and your husband are wise to learn all you can before deciding. My second device developed an infection and I was laid up for 51/2 months. Still most people have no problem and forget they even have a device, though any chance of making the cover of sports illustrated swimsuit edition is unlikely.

Keep us posted, and good luck.

Re: New to ICD recommendations

Posted: November 30th, 2017, 11:34 pm
by Mahamohanna
Hi everyone, this great support group ! We had our follow up with the EP yesterday . He answered all our questions .
He told my husband he is recommending a one lead ICD because the increased risk with the one VT episode which was 29 second his recorder registered on October 5th. This coupled with his low EF of 32% . For a while I thought my husband was convinced but the EP kept telling him this is a life time commitment and he should understand that . Well he really did not explain what that mean. My husband asked him if we could wait until early March as we had prior travel commitments, again the EP said ok ?.. he made it sound non urgent .....but we agreed to take an oppoitment . My god , you should have seen my husband anxiety after we left the office , I really thought he is going to have a heart attack before March . I quickly told my husbands let’s postpone the decision until March , he was relieved and asked me not to talk about it anymore . Which I did .

That was the worst appointment we ever had , and our perception was like no urgency , life goes on and just make sure you understand you are making life time commitments otherwise you may die .
Sorry to go on and on but I find myself needing the help not my husband, he is happy to go on and not to think about it.
God help us . I am stilling looking for a live support group