First Shock

Hi everyone,

I had my ICD put in on June 8th, and was feeling remarkably good. Before the implantation I was feeling pretty hopeless and emotionally dead, I just couldn't cope. Following the surgery I was a little sore but sort of went back into "normal" mode emotionally. In fact, I stopped thinking about the big issues and was just relieved the surgery went so smoothly. Friday night while out with friends, I got shocked once. Not only was I completely surprised by it, I was also very embarassed to be with so many people and become instantly helpless. Since then, I have gone back to feelings of hopelessness, anger, sadness, and a new one- constant fear. The idea that I could have many more shocks ahead of me (I am only 23) is nearly paralyzing every minute of the day. I am just so tired of fighting, and this device that will save me is also scaring the hell out of me. Any words of wisdom from anyone? I'll take all the help I can get.

8 Comments

first shock

by luckyloo - 2007-06-17 07:06:13

dear sunshine,

what heart condition do you have that you need an ICD? i have long QT syndrome. i'm 43. i've had my ICD for 6 years. i did receive 1 shock that was an inappropriate shock due to a fractured lead. 31 joules...it hurt like hell. i thought someone shot me in the back and i was being robbed. i was going out for a run when it went off. i jog with my cell phone so called 911 for help. very embarrassing.
i understand the anxiety about more shocks. some people i talk to have gone into counselling....learning methods to relax etc. others went ojn anti-depressant and anti anxiety drugs for a short period of time, others long term. it is scarey being forced with your own mortality. for the most part i can forget abbout long QT and my ICD other times i get panicky. i have become stronger in my faith in God because of all of this. i also talk to other young people with ICD's and long QT syndrome with a yahoo group. there is a discussion board called "the zapper" for people with ICD's, young and old. hearing their stories has helped. some of them have been shocked 50 times in one day. they are called "zap storms" they were shocked because of inappropriate settings.

was your shock an appropriate shock or was it because your settings were wrong, lead fracture or something like that?

you can have a feature turned on in your ICD that will sound a warning alarm as the ICD is charging getting ready to shock you. you can then sit down and brace yourself. you'll have to ask your dr. about it.

do you live near michigan? every fall they have a "young people with ICD conference". it is all free. it's put on by u of mich , medtronic and guidant. they have a variety of meetings....you choose which ones you want to go to. people come from all over. they have guest speakers who talk about life with an ICD and their near death experience. they have dr.'s and nurses who speak about a variety of topics. there are meetings where we all just get together and talk , cry, laugh. there are meetings for your parents to get support and spouses. the teens and children have their own meetings too. they even go on a fun excursion to the local zoo or orchard. they have a lunch with more speakers. it is a lot of fun.

this site is full of wonderful, caring people. there are a couple of us with ICD's. i have learned so much here and have felt very supported here. i know you will too.

God bless,
luckyloo

response

by sunsh1ne - 2007-06-18 08:06:17

wow, this is a great community. thanks for all of the kind words and information everyone.

i have dilated cardiomyopathy, which i was diagnosed with about 11 years ago. a few months ago my ejection fraction dropped down to 31 (it had been around 50 for the last 5 years), and my EKG started showing some stiffening in the left and right ventricles. they started me on new meds, but i haven't responded to them. actually, i'm deteriorating still, albeit less quickly.

the defibrillator is in because they are worried about sudden episodes. however, when it went off on friday, it was because i'd just run up some stairs and my heart was responding normally (well, my HR was 194, but this was due to exercise, not a sudden rhythm problem).

the medtronic guy interrogated the device and technically the ICD did exactly what it's programmed to do. however, my doctor (and i agree) thinks that we need to adjust the settings so that it won't go off when i have an appropriate HR increase, only when it's a sudden rhythm problem. we just need to be careful not to make it so unsensitive that it doesn't react when it needs to. they are also going to increase my Coreg so my HR will go down in general.

i am feeling better today emotionally- maybe that is because i have been busy nonstop at work. i think also knowing that they will adjust things so that the ICD will only shock me when absolutely necessary will help with my peace of mind.

thank you again for the words of encouragement- they mean a great deal to me. God bless.

rae

rae

by jessie - 2007-06-18 11:06:39

hi rae, i am thinking of you and the the best advice is time and acceptance of this condition. it is not easy and especially your youth and the fact that you have these issues so young. there are a lot of people on this site young like you and you need to talk with them. a lot of them are heroes in my books and can help you to adjust and accept. life will get better. each day is a gift rae. all the best and please use this site daily if you can and your life will get better jessie

Hi Sunshine

by randrews - 2007-06-18 12:06:13

I'm sorry to hear all the stuff you have been going through. I don't have an ICD but I sure understand the feelings you are going through. I only have a pm but it was traumatic enough to bring on depression and panic disorder. I'm working on those issues.
I'd encourage you to stay close to friends and this site, etc. talking and sharing your experiences is a key. It's been 3 months since the pm went in and emotionally things are better. Please stay in contact and let us know how you are.
God bless you,
Rusty

Sorry

by Niborbob - 2007-06-25 02:06:39

I am still trying to learn my way around this site, I meant for this to be a post, not a comment. but while I am here let me say, please don't get tired of fighting, and on the upside, at least you know the thing is working! And really don't be embarrassed! luckloo gave you some good advice, and time and a whole lot of praying has really helped me. I know I am twice your age but trust me, I am still not ready for the alternative to not having this device. i wish you the very best and urge you to please give it some time. I also know a girl that now I guess is about 30 or so, she has had a ICD for about 7 years and it has shoked her once, so maybe that was it, but if you need it, at least it is there.God bless you.

It's Alive!!

by Niborbob - 2007-06-25 12:06:14

I have had my ICD for almost a month, the first two weeks I was pretty worried it wasn't going to make a difference, but then I suddenly felt 100% better, I am doing very well, and i know I will feel things i am not used to but will get used to it. I am a 52 year old woman, and until this past Feb. I had no idea I even had a heart problem, suddenly I was diagnosed with CHF. Wow, they still don't know what to attribute it to since I haven't had a chronic illness. i have learned since then, to be thankful for the 52 years i was healthy. this is my question, with all of this well doing, about a week and a half ago I started having what feels like a small gentle kick, sometimes on my right side,(my implant is on the left), sometimes in the middle of my back, usually while I am at rest, sitting down or lying down, could this be muscle spasams? thats what some have suggested. There is no pain whats so ever, just a small jolt. Is this yet one more thing to get used to? not that I am complaining, my future was pretty grim before the implant.Anyone knowing if this is normal after 1 month of having an implant, I would appreciate it if you would tell me what the heck it is. sometimes it happens a lot during the day, then I may go days without feeling it. My device has been checked twice since the implant and each time they say it is working perfectly. also, has anyone pulled a lead? what does that feel like? sounds painful. Thanks in advance for any comments. I have never had surgery until this, I thought I got a shock and didn't, it was nerve endings, so yeah, thats how dumb I am about my body recovering from surgery. Thanks again,
Robin

Tackle

by fibby - 2007-09-18 09:09:35

You need to tackle your issues before they become larger ones. We all share the same paranoia, and I found it especially humbling and you might need to learn ways to relax and breathe. (Believe it or not it took me forever to breathe correctly, its hard!) but very good for your body. I used to be a competitive athlete, now I am a coach. The hardest part is accepting the change, if you have any questions let me know.

14 year old

by Anita - 2008-05-16 01:05:30

I'm so sorry that you are having to go through all this at such an early age. It doesn't seem quiet fare. My son got his ICD when he was 13. He had it for 3 mos when he got his first shock. He was near a baseball field, and he thought he had been hit with a baseball. He was looking around for the baseball and realize it was his ICD. We were at the beach last summer and he got shocked 8 times in 20min. His heart rate was going 313 bpm. He has ventricular tachycardia. What is wrong with your heart? I just wanted you to know that you are most defininely not alone. I have heard of so many young people having an ICD. It doesn't seem fair. My son is experience all the things you are. He has panic attacks soooo bad. He doesn't do anything but lay around watching tv. He checks his heart rate all the time. I know he doesn't tell me everything, but I just wonder what he is thinking at times. Please try and stay strong and just keep talking to others. I wish you the very best...

You know you're wired when...

You take technology to heart.

Member Quotes

The pacer systems are really very reliable. The main problem is the incompetent programming of them. If yours is working well for you, get on with life and enjoy it. You probably are more at risk of problems with a valve job than the pacer.