I'm supposed to get an ICD but I'm afraid...

I am a 48-year-old female who had VSD closure/open-heart surgery at age 11. I have had no significant issues with my heart until now. I had an episode at work to where I was trying to walk to my car but became so winded that I could only manage to walk a few steps at a time. I went for an EKG and chest Xray a few days later and found that my heart was beating too slow. Long story short, after three months of monitoring me, my cardiologist has ordered me to have a defibrillator implanted. I've been reading this website and others and now I'm afraid that once I get the device, I'll be so worried about it shocking me that I'll be a nervous wreck. I need to lose some weight so I want to start a new exercise regimen - will exercise even be possible with an ICD? What happens if my heart strengthens, will the ICD have to be adjusted? I have so many questions...

14 Comments

I have the ICD

by cruz - 2010-09-29 02:09:59

I have a 3-lead which is combo of defib and PM. I have the same fear as you, but the alternative is that don't have the defib to go off if it's needed. If the defib goes off, it means you were in trouble. It's possible you can exercise after the incision heals and the leads bond. The amount and type of exercise depends on your diagnosis and condition. I have a very weak heart instead of a slow heart so right now, I'm not able to exercise. Talk to the cardiologist or his nurse for the answers.

sister has one

by vikyms828 - 2010-09-29 04:09:43

my sister has a PM and defib she has had her PM for 12 years and defib for 6 years she is 48 now.. and she is doing great . it has only shocked her once and she said it wasnt that bad just startled her because she wasnt used to it. hasnt done it since and she walks everyday and never worries about it.

I need to further investigate

by Fljournalist - 2010-09-29 05:09:15

Thanks everyone for the replies. I do have to pin my cardiologist down to answer some questions. He's the very best cardiologist in this area, head of the heart surgery unit at the local hospital, but he basically whips through each appointment - he told me this time that my heart hasn't improved in the last month (ran echocardiogram and the 24-hour heart monitor test). He said my heart is as good as it's going to get and I need the defib to "prevent sudden death." He didn't say what kind of defib or anything, other than to reassure me that he didn't have to open up my chest to do it. I think I may get a second opinion from someone who will better explain the process to me.

defib

by Tracey_E - 2010-09-29 06:09:31

It's annoying but typical that the drs with the best reputation can be too busy/arrogant/whatever you want to call it to sit down and explain things to us! You deserve an explanation of what he found and to understand how a defib will help you.

A defibrillator is put in the same way as a pm, it's just a little larger and has an extra lead for when it needs to deliver a shock. All defibs (icd) come with a pm also, but not all pm's have defib. It would be nice to get an explanation of what was in those tests. If he found sudden racing or something like that, that could be why he thinks you need the defib in addition to pacing. The icd can shock you out of a dangerous rhythm.

When he said sudden death, he was probably referring to ventricular fibrillation, when the ventricles quiver instead of beat to make a pulse. Most people who experience this do not live to tell about it. It's called sudden cardiac death, and if you are at risk for this an icd can save your life. If all he found is a slow hr, you should be able to get by with just a pm. He's not giving you the whole picture! I'd get a second opinion, find someone else to review your tests and go over them with you.

icd or pm?

by Tracey_E - 2010-09-29 08:09:43

Why do they want to give you an icd rather than just a pm? A pm will fix a slow hr. They usually add the icd if you are at risk of vtach. If they say you need the icd, you should be more afraid of not having it. No one wants one, but kicking in just once can save your life. The fear is normal but most get over it fairly quickly. There are a lot of others here who have been through it and will be here for you.

Yes, you should be able to exercise. The devices are programmed at what rate they go off, and it's well above where your hr would be to safely work out.

Get more info

by cbaker - 2010-10-11 11:10:03

I agree with the previous writer. You need to understand why your cardio wants you to get an ICD vs. a plain pacemaker. Otherwise, it's really not worth it to go through the anxiety, right? Ask 1) what the specific risk factors are for sudden cardiac arrest and 2) whether there is a support group or dedicated support of any kind for post-implant anxiety and 3) what the percentage likelihood is of your receiving an inappropriate shock. You need to be more informed.

Start exercising now, don't wait! Walking! I walk (not fast at all, but . . .) and walking is a great place to start -- take it from a couch potato, it makes a difference, and you'll start losing weight. And you can start up walking again within a day or two of the implant, if you decide to do it. Good luck.

I'm meeting with the surgeon

by Fljournalist - 2010-10-12 12:10:07

I have made an appointment with the doctor who is actually going to be implanting the device - I found out when the office called to set up my surgery date that my cardiologist doesn't actually do surgery, his partner does. From what I understand, the partner has a much better bedside manner. His assistant reassured me that he will take the time and explain anything I want to ask him. And I have started a list of questions that will no doubt be a mile long.

PM

by dad4dds - 2010-10-30 06:10:59

I have had mine for a year. I felt it twice. I assume it is still pacing. I have to check my heart rate everyday. It is at 60 ppm everytime. It was 38 bpm before that. So you get used to it. you will probably nerver feel it. Good luck.

We are here to help each other.

Brian

Met with the surgeon and...

by Fljournalist - 2010-11-11 01:11:07

I don't feel any better about the whole situation. He had about the same attitude as my cardiologist: "It's up to you whether or not you want this." They both say I need it, but both say it won't help how I feel, it'll just prevent sudden death. And they both say I still have to take the three heart medications I'm on for the rest of my life. I've never had problems with blood pressure, palpitations or fainting, but now all of a sudden I'm taking metropolol, enalapril and digoxin. If the ICD is in place to prevent sudden death, wouldn't it make these other pills unnecessary? I am still up in the air about everything and my surgery is scheduled for Monday.

ICD plus meds

by cruz - 2010-11-12 10:11:56

I have posted earlier but see responses that indicate a certain condition pertaining to a pacemaker only. I have DCM (dilated cardiomyopathy) and my ejection fraction rate is very low (11 when diagnosed). This puts me at risk for Sudden Cardiac Death and a pacemaker alone will not take care of my problems or prevent SCD. My heart is very weak and the damage is severe. I had the same problems getting to my car at work. When I was diagnosed and they went over the tests, I was told not to exercise. I was put on the meds and after 3 months without improvement, the ICD was implanted. I still have to take the medications. The device doesn't replace the need for the meds and the meds don't prevent SCD. The diagnosis is important in deciding which meds and which device. I had no hesitation about having the procedure. I had a co-worker, just a few months prior to my diagnosis that just didn't wake up one morning. She died of SCD and had no idea she even had a heart condition. I had the implant in Feb 2010, and in spite of the fact that the cardiologist felt it wouldnl't make me feel better, I've just recently begun to have a bit more energy and less sleep required. In the beginning, the meds can make you feel even worse, but it's their way of getting into your system and it's the start to making your hear better. I'm told that 10 years ago, they didn't even have the drugs they do now that are extending our quantity and quality of life. I go to a Heart Failure Specialist now. His opinion is much different concerning how I feel and how long it can take for measurable improvement than the cardiologist. I would suggest you talk to the doctors more. Of course they tell you the decision is yours. They can't force you to undergo the procedure, however, if this is their best advice and you trust them you should seriously consider the implant. Whether it's a PM or ICD doesn't make any difference in my day-to-day life, the scar or the meds. It does however, give me and my family a sense of security to know that if my heart doesn't "react" as it should, I have this safety net (ICD) that will take over and do what has to be done to keep me "ticking." What cardiac condition have they diagnosed and what tests have they run?

Well, the embarrassing truth is

by Fljournalist - 2010-11-12 12:11:23

that I never pressed the doctor on a diagnosis. Once I heard "heart is working at 25 percent" and "sudden death", I basically shut down. And I don't really have time to postpone the procedure and get another doctor on board because my insurance is going to change in January and the procedure would cost A LOT more out of pocket under our new plan. So my thought at this point is get the device and ask questions later.

Sudden Death Survivor

by sgriggs - 2010-11-23 11:11:26

Hey, girl! I'm a 39-year-old female who survived a Sudden Cardiac Arrest 1 1/2 years ago. I had no warning or other indications that sudden death was in my future. A second opinion from another cardiologist may not be a bad idea, but don't fear the ICD device itself, ICD interrogations, or adjustments. Trust me, if your cardiologist suggests you are at risk for an ICD, take this seriously. The survival statistic for individuals who experience an SCA in my state is 5%. You certainly don't want to take your chances with odds like that! I'd rather experience a life-saving shock rather than sudden death. I'm so sorry you're having to face this decision head-on right now, but you'll feel better about your decision if you're more informed by your cardiologist or by seeking a second opinion. Keep us posted on what you find out because there's no reason to feel as if you're alone. Hang in there!

My Hubby

by lahowell - 2011-02-06 02:02:19

My husband is an ICD recipient. In May of 09, he had Sudden Cardiac Death syndrome.......He had just had a physical, and received the results a week before. The Dr. told him he had an irregular arrhythmia, but that it was nothing to worry about.......Then after a hit and run which involved him chasing the guy down, while on the phone with 911, he got so worked up, that his heart stopped. Imagine my surprise when the police showed up at my door (after just kissing him goodbye and hr. and a half earlier) to tell me he was in the hospital in critical condition. It took them an hour to restore a rhythm, and prognosis was not good. After 9 days in a coma, he woke up, and surprisingly enough had no residual effects. The ICD was implanted, and we went home a few days later. This is not the usual response of a SCD patient, especially one that had been "down" for so long. They were so surprised at the outcome that they did a newspaper article about it....He did get upset at a former employer, which in turn caused him to get a "shock", but his response was so mild I thought he was joking.....It only shocks to the degree of severity of the irregularity, but had it not been for the ICD we would have been right back in the same boat!!!I have to say that life has been great since, and we do not take any time for granted. He lives a full life. It did take a little getting used to, but I highly recommend getting the procedure if the Dr.'s are recommending it. I had to have a cath for possibly needing the same thing, but they said I do not at this time. I wasn't worried at all, as I had already been through this with the Hubby, and had been on the outside looking in. To tell you not to worry about it would be to tell you not to be human, but it will improve your life, and you will no longer have to worry about SCD. Best wishes to you!!!!

have one!

by BRBandy - 2011-02-16 01:02:46

I have a pacemaker defibrillator combo, 3 wire.
Didn't have Afib for about 3 1/2 months. With no warning the defibrillator went off 3 times in about 30 minutes, and about 30 minutes later it went off 2 more times. Went to the emergency room and the device was checked, it showed I had an Afib event of aprox 240
Spent afew days in hospital put on meds and sent home. Some people say the shock is not too bad, well let me tell you, it knocked the crap out of me! I haven't had any more episodes in about 4 or 5 months. They said the device was doing what it is supposed to do, so I guess I owe it my live, at least I'm still Here!!!!

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