No complications with ICD?

I am an active 47 year mom of 3 young kids and I've been recommended to get an ICD. I have started to look at support groups like this one for information regarding what it's like to have and ICD. It's been scary in that most postings seem to convey all the horrible, uncomfortable aspects of having an ICD. Things such as unnecessary shocks, shock storms, burning pain at implantation sight. Is there anyone out there who is active and doesn't even know they have an ICD anymore? I'm so worried my lifestyle will go downhill once the ICD is implanted as I really love to exercise. Can anyone attest that it doesn't have to be this way? Thank you so much for any feedback.

9 Comments

ICD

by rustynak - 2014-03-25 02:03:04

Just got one put in Friday. Back to work today. I like the way my doc said it. Its better to have it and not need it then to need it and not have it.

Thank you all for your comments

by MillerKAP - 2014-03-25 04:03:58

Thank you all for your uplifting comments! I really needed them. They have have given me some good perspective and been very helpful.

I have a gene mutation (LMNA) that causes dilated cardiomyopathy and potentially sudden death from VT. I have 8 family members who also have the mutation. I feel great and exercise often, so it's hard to understand i'm still sick. Hopefully I won't need the ICD, but I am at increased risk, so therefore they want to put it in.

I would so love to meet people leading full lives with ICDs. It's important to know there is hope. Thank you!
Karen

agree with tracy

by wjs1954 - 2014-03-25 12:03:29

However i do not have a ICD..

Just a Pacemaker, here like in life generally you hear more of the bad than good.. Just turn on the news, sad but true. good luck, i am sure there are many good stories and you will be putting the next one up...

life goes on

by Tracey_E - 2014-03-25 12:03:50

I have a pm, not icd, but I'm the same age as you. I got my first one in 1994 and rarely give it a thought. I'm healthy and active, do Crossfit 5 mornings a week, hike or ski most vacations. There's nothing I want to do that I cannot.

Why are they recommending the icd?

It's good to read and be informed, but keep in mind many people come here because they've had rare complications. In reality, complications happen only a very small percentage of the time, so reading the posts here can make it seem out of proportion. For every one person here with complications, there are hundreds out there who heal and get on with their lives. We have members here who run marathons, triathlons, there have even been Olympic athletes with cardiac devices.

good luck

by Jay4 - 2014-03-26 11:03:52

I am an active and avid runner. I am just finishing my career in the Army (28 years 10 months 23 days can't stay in with ICD). I too am 47 years young. I had surgery for an ICD on 18 December 2012. On 3 January 2013, my doctor gave me a clean bill of health and told me that I could continue to run and do the things I used to do. I had to be careful with the incision for another 30 days but my physical activities went back to normal. I am not going to say that it is rosy, but it is not that bad. I am back to 6.5 miles a day running (I used to be around 7.25) I can’t lift as much because of the scar it still hurts a little (scratches) but I can still lift. So I say that to say this “it isn’t the end of the world, don’t let the ICD control you, you control it”. Of course, that will be with the advice and the recommendation of the doctors. Good luck and as soon as your doctors say to go back to doing what you want do it.
Jay

Thanks Jay

by MillerKAP - 2014-03-28 11:03:25

Jay
Thank you so much for responding to my question and for giving me your honest feedback. What you described is basically what my EP said would happen. Although I think he was a little more optimistic that all would heal fast and I'd be back to normal within 3 months. It sounds like it's been over a year for you and you're still not quite back to where you used to be. I'm sure the incision and healing process is a lot longer and more painful than my EP has let on. It has to be since it's really an invasive surgery! Well sounds like you're doing quite well...Im so glad to know that. All the best!
Karen

Good Luck

by Jay4 - 2014-03-30 07:03:51

Karen, I think I am close to being back to normal. The only thing really holding me back is mentally not so much as the physical aspect of the surgery. I went to the gym today and did my normal run. I know I can handle the pace of 7.2 on the tread mill but have yet to get over that hump. So physical I am back with no health problems from the ICD. Karen if you can overcome the mental than you will do awesome. The surgery isn't as difficult as you may think. When I looked at the clock before I went to sleep it was 420, when the doctor was waking me up it said 545 (I have the two wire). I was shocked it was so fast. I am not trying to make light of the situation however if someone is recommending then you need the procedure. For all those doom and gloomers it isn't bad at all. Do I still have bad days, yes I do but the good outweighs the bad. (FYI I am not a paid spokesmen for any company). the only thing that the ICD has taken from me and it was long time to give it up was my military career after 29 years and I volunteered and gave up the cigarettes. good luck Karen and you will be in my prayers.
Jay

Living a Dream

by kzilko - 2014-05-06 11:05:47

Karen,
Like yourself, I am a very active mother. 42 now, 39 when I went into cardiac arrest from undiagnosed Long QT and ICD recipient. I spent 6 days in the hospital miserable about how receiving this diagnosis and ICD was going to ruin my life. Nothing could be further from the truth. Although I have a few limitations, very minor, there have been no great change to my lifestyle or physical activity. I feel fantastic and am so glad to have the peace of mind that I will be around to watch my daughters grow into mothers themselves and shower me with lots of grandkids. I will not lie though, coming to terms with this in the beginning was very difficult and I was a terrible patient for that hopsital staff, for which I feel terrible now. I was a marathoner and avid athlete, willing to try anything. I think the ICD made me realize that perhaps I needed to slow down a little and enjoy the things around me instead of always looking for the next physical challenge. Good luck to you and your family. You will be in my thoughts and we are all here to suuport each other.
Kathleen

Thanks Kathleen

by MillerKAP - 2014-05-22 01:05:06

HI Kathleen

Thank you so much for your response. It's made me feel so much better to connect with someone like myself!

You know you're wired when...

You invested in the Energizer battery company.

Member Quotes

I am 100% pacemaker dependant and have been all my life. I try not to think about how a little metal box keeps me alive - it would drive me crazy. So I lead a very active life.