New To ICD's

Hi All,

Wow, I can't believe there's a MB for people w/ ICD's/PM's, that's great! I even see there are a lot of young people on here (i'm 29, female). Well, my story is that I was out jogging on 5/29 (wasn't really going fast, just kindof warming up) and I got extremely dizzy and passed out in the grass (still face planted and ended up w/ a nasty bruise on my chin). A neighbor saw it and ran over and roused me and we headed to the ER. I got the regular workup of tests (blood, EKG, echocardiogram, etc) and it showed that my troponin levels had spiked a bit and my EKG looked very "brugatta-ish" which made them all think "hmmmm?". To make a long story shorter I spent a week in the hospital going thru a battery of tests meanwhile my tropinin levels quickly returned to normal and my first EKG went from "brugatta-ish" to looking the 2nd and 3rd a few days later looking "long QT-ish" which they think was how it probably normally looks when my heart isn't traumatized.

After a week of torture (ended up having 4 EKGs, 2 echos, heart MRI, heart catheterization, Chest Xray, lung scan, abdominal scan, etc and finally the dreaded EP study) and most tests coming back squeaky clean (veins completely clear, heart/pumping, etc is strong, oxygen was great, etc) the conscensus was that I needed an ICD for the very abnormal EKGs that showed "long QT intervals" and they also saw this on the EP study though they weren't able to reproduce any sort of arrythmias. They said I was probably born w/ this and at risk for the sudden cardiac death thing. It all felt really strange, but this was supposed to be the 8th best cardiac place in the country (Duke) so I had to trust them. I cried and stomped my feet at the idea of this damn ICD. I'm too young, there's nothing wrong w/ me, you're "heart" people so of course you're going to recommend a defibrillator for NOTHING, you can't find out what's REALLY wrong so you want to send me home w/ this thing so YOU feel better, etc. I really feel like a freak w/ this weird health problems (I was also diagnosed w/ breast cancer out of the clear blue sky when i was 27) and the last thing I wanted was to see that "freakishness" manifested visually from some ugly bump sticking out of my skinny chest (i'm 5'4, 120 lbs, athletic and take great care of myself). I really thought they would tell me I had low blood sugar and send me home (especially considering I have never passed out in my life other than once in highschool) but 5 EP's agreed that I shouldn't leave w/out a defib. I felt I had to suck it up and not let my stupid vanity get in the way of my health (even though I STILL question if I really need this thing and if it's not overkill ).

Well, I just got my ICD on 6/5 and holy moses am I sore. They made it sound like it would be a piece of cake procedure too but for the past two days I have had trouble even MOVING (seriously). I have pain meds and they knock me out, but right now the only comfortable position for me is flat on my back... turning to my left or right when trying to sleep (which is ALL i'm doing other than watching TV for the past two days) makes it feel like something is just pulling like crazy in my chest. They say don't raise up your arm or really do much for several days well NO PROBLEM b/c I couldn't even if I wanted to. Is this normal and when will it get better? They did say that my case was particularly difficult b/c I'm small and don't have much body fat so they really had to manuever to stuff that box in my chest (I was awake almost the whole time and could feel the surgeon basically trying to pound the thing into the pocket). So I hurt all over both sides of my neck and down both sides of my shoulders and of course anything remotely close to the incisions hurts (I feel like a puppet strung way too tightly who can't move). The most bothersome thing is when i breath in very deeply the end of the breath hurts as if I have some sort of ache in my back, neck, throat or something. I'm sure it's all related to a lung pressing on a sore area of which everything is sore from my waist up....

When will all of this go away??? It IS a little bit better today than yesterday (i.e just being awake doesn't require pain pills) =-) but i'm wanting to go back to work soon (I was told i'd be good to go in like 4 days) and I'm NOT seeing that happened. I know, in general, I'm probably pretty impatient and it's only been 2 days but sheesh.

I also was wondering if anyone had to have an ICD implanted for a similar situation (passing out and one thing leading to another and the docs deciding you might be at high risk for another episode)?

Anyway, just wanted to say how excited i am to see a mb for this and how cool everyone seems (I read some of your posts). Glad I'm in good company and thanks for letting me on your website!!!! I'm sure I will have a lot of questions as I get more used to "Kevin" <--- that's what I named my ICD after my EP. Thanks and god bless.

9 Comments

Welcome

by Pookie - 2008-06-07 10:06:11

Welcome to the club. You have found a wonderful site that is a wealth of information and the greatest support.

I don't have an ICD, but many folks here do. I have a pacemaker.

Your recovery period is an individual thing, and going back to work in 4 days seems kinda quick to me. If you can take a bit more time off of work...I would!!!

One great feature of this site is the "search" which is at the upper right hand corner of this screen. Also, on the upper left hand side of the screen is where you can enter the chat room! Great fun and very informative.

And the very best part of this site is when you have any questions there will be lots of people here and willing to help you.

Pookie

Hello!

by HelenB - 2008-06-08 02:06:17

Hello (and hi, Kevin!) - welcome to the board! I'm 24, female and just had my ICD implanted.. almost 4 weeks ago now. I know exactly how you are feeling with the pain... the first few days were awful; like you, I could hardly move. I had Tylenol 3's and I took them every 4 hours without fail for about 5 days after the surgery.

To reassure you, I am feeling MUCH better now. The site is still tender and I'm not moving my arm much yet, but I am getting back to being active and am very much improved from the first few days.

My experience has been different from yours, though there has been a lot of uncertainty in my diagnoses as well. In November 2006 my uncle died suddenly while riding his bicycle. His autopsy revealed that he had HCM, which he had not known about. The whole family started getting tested, and we found out my Dad has it and I have it as well, (and another uncle and aunt, and some cousins!) although mine is not very bad.

The EP doc who listened to my holter also thought he heard Wolff-Parkinson-White syndrome, so I had an EP study done in February. It came as a huge surprise to everyone, including the doctors, when the EP study revealed not WPW but Brugada Syndrome, on top of the HCM.

I love my EP doc (which I know makes me really lucky because I have heard lots of negative things from others). He was very honest with me.. he said we may never know 100% what's going on in my heart, but we do know that there is a danger of sudden cardiac death, especially with my family history. He suggested an ICD, but acknowledged that it is a huge decision to make. He left that decision up to me.

I decided to get the ICD. My Dad has one as well (his HCM is a lot worse than mine), and I knew it would make my family and myself feel more secure. My EP doc didn't pressure me one way or another, but the day after my surgery he phoned me at home to say he was glad I went through with it and he thinks I made the right decision, which made me feel good about what I'd been through. (I do agree, though, with what others have said... most doctors don't realize how difficult the recovery can actually be!).

I can understand your feelings of uncertainty about whether you really need the ICD or not. It sounds like with your fainting it might be a good idea. Sometimes I think we just have to accept that the medical world is made up of humans, too... they don't know everything and they aren't perfect, but usually (not always, I know), they are trying to help. I'm happy with my decision to get the ICD. It's a little noticeable, but I think anyone who is bothered by it isn't worth worrying about. (I'm small, too - 5'1 and 100 pounds, so like you they really had to do some digging to get it in there!). And, I feel more confident living by myself now, not always worrying about fainting or experiencing SCD when I'm alone.

I know you will find lots of information and support on this forum. It has been very helpful to me over the last month as I get used to my new helper, "Harvey".

Helen

Hang in there

by fibbermcgee&mollie - 2008-06-08 03:06:07

I was diagnosed with HCM and my holter monitor showed I was in V-tach. All other tests normal. My EP said I met 2 of 5 crieteria for an ICD. She left it up to me. The uncertainty of sudden death made it a no-brainer for me. My implant was put in on 5/28. Named the unit Fibber McGee and my lead is called Mollie, his famous sidekick. Surgery on that Thursday aft went well. Was back to work last Monday, 6/2. The first few days after surgery are uncomfortable, but you will be off and running in no time. I rode my stationary bike yesterday for 50 minutes and felt great. Can't wait until 6/12 (14 days from surgery) when all restictions on raising my elbow above my shoulder are removed. Can't golf until 6/27, but already entered a tournament over the weekend of the 4th. Had my EP use double sutures so I can return to playing rugby by mid-July. I view my IDP as an ER in my chest allowing me to live a long and normal life. Check with your own EP because all recovery periods vary. However, I think most of the recovery time advice on this site is too conservative. Go for it. Good luck, Fibber & Mollie.

fibbermcgee&mollie . Question

by turboz24 - 2008-06-08 03:06:23

"Had my EP use double sutures so I can return to playing rugby by mid-July".

I assume by this you had the ICD implanted under the muscle and not the skin? What does the doc think about a non-padded contact sport? All I know is that with my ICD and it's location, one swift hit and I'm probably going to rip open and have it pop out.

Welcome

by harley63 - 2008-06-08 03:06:27

Glad you found us!!! This is a great group of people with loads of knowledge, support & humor. Welcome!

Don't let my screen name fool you.. I'm a little spit fire.. yeppers, one of them sassy women. I had to laugh when I read that you have already named your ICD. My pacemaker is what I got for Christmas in 2006.. asked for "rocks" and got "internal bling bling" instead!! :O) TOTAL surprise after being found face down on the kitchen floor due to 3rd degree AV block... another surprise!

My best advise... The road to recovery can be similar to an obstical course.. stay hydrated, eat healthy, get proper rest, think positively, ask questions (make a list if needed) about medications and ICD setting adjustments to fit YOUR lifestyle/age, and most importantly, reach out to your support systems during this journey for optium health. We are here for you as well, but nothing can replace the human touch that family, friends & pets can provide at this time in your life!

Hang in there and keep us posted on how you are doing. I'm cheering for you!
Harley63

Welcome!

by candi51 - 2008-06-08 08:06:51

Welcome and hello to you and Kevin!!

I am 31 yrs old and just received my ICD on Monday.

I was diagnosed in Feb with a rare heart condition called Left Ventricular Non Compaction.

I too have had lots of feelings along the lines of "why do I need this dumb box in my chest" even after 5 cardiologists (2 of them EP's) said I had to have it. I mistakenly thought that ICD's & PM's were for people over 80! I couldn't figure out how at 31 I needed this!!!

I was totally going to cancel but I decided to go ahead after talking to 2 friends who are cardiac nurses and said the risk of SCD was too real.
We trail ride with the horses alot and they reminded me that we could be in the middle of the forest/bsck country with 100 cardio Dr's and I would still never make it without a defib shock. So I guess in that way I am glad to have it.

I haven't had any episodes yet so my insurance company was a real hurdle and the Dr's were sketchy on info at first with us. But we pressed on and made it happen.
Like ela-girl said- the squeaky wheel gets the grease- and that is SOOOO true.

Anyway- so glad you found us! It has helped me a TON to have these wonderful people to talk to and so many that are my age!!

I hope you feel better every day!!
Candi

You guys Rock!

by ghettofibrullous - 2008-06-08 09:06:16

Thank you so much I can't believe the quick responses and enormous amount of support I've rec'd from all you. You guys have made me feel so much better and not so "alone". I also feel better ela-girl & Helen that you don't feel that an ICD was overkill in my case (i've been doing a lot of second guessing since my EP study came back essentially negative and there was no cut and dried diagnosis). Also that you had similar recovery experiences and that I'm not abnormal (at least in that regard).

LOL, i also love the other names for the devices.

Also, on the internal bling bling, i was thinking that too.... I was told my device is worth about $40K... eat your heart out P-Diddy. Well, maybe not P-Diddy (he probably has $40K on his pinky), but one of the lesser rappers. I'm still ghettofibrullous.

Yeah this is just all so crazy and I totally agree w/ the comment 'anyone who thinks anything of {Kevin} is not worth thinking about. If I'm honest though I'm a little apprehensive about going back to work and having people staring at me wondering why I'm so broken (first cancer, then this and I'm 29?) Hell, I'm wondering why I'm so broken and if this was caused by something I did (my EXTREMELY anxious nature... Sertraline which I read increased QT intervals?) and that's a little upsetting too. My mom says (and I know she's right) that people are far too caught up in their own selves to worry about what I'm doing, but I still can't help but feel a little ashamed that I'm having the spotlight on me for these unwanted problems (and causing some people to have to pick up the slack for me at work while I get my health in gear). It just sucks, but I'm trying to stay positive and having you all certainly helps more than I can express.

Glad to have you on board!

by ela-girl - 2008-06-08 12:06:23

Welcome "home'! I'm so glad you (and Kevin) found us! This is a great place to come for friendship and information.

First, I have to say I LOVE your username. How cute!

Second, I don't have a lot of time to write at the moment but wanted to make sure to say hello. I had my pacemaker implanted when I was 29 and it's been almost 2 years now (I'm almost 31). So, I can relate to you and some of the feelings you might have for being so young and having to have a device. I'm also a skinny minnie, so I can relate to that, too. I'm 5'2" and 102 lbs but I know that pm's are much smaller than ICD's. I got my pm for severe bradycardia and NCS (5 years of blacking out all the time).

Doctors always make pm/ICD implantation seem like no big deal because it is considered minor in the realm of heart surgeries. However, it's not at all minor to those of us who go through it. It WILL get better. But it WILL take more time than they tell you. Also keep in mind, though, that YOU need to be your best advocate. So, if something doesn't seem right to you, don't give up and keep pestering the doctors. We know our bodies. Many of us on this site have had to fight for attention to be paid to us when we weren't feeling right when doctors tell us nothing is wrong. And in the end, the squeaky wheel gets the grease.

I was off work for 3 weeks before returning (I was a teacher at the time) and still could have used more time. Make sure to take an easy with that arm for 6-8 weeks. You want to make sure that your leads are firmly entrenched into the heart wall and don't become dislodged. That usually means no lifting your arm on the implant side above your shoulders, no pushing or pulling, and no reaching towards your back with that arm. Usually, no lifting over 5-10lbs either. For me, icing the incision site with ice packs was enough to deal with any post-op discomfort. I also slept propped up with a plethora of pillows! That helped. And if you have bra questions or anything else, just ask and all us women will come to your rescue!

I'm no doctor, but I don't think an ICD was overkill in your case. SCD is a very real possibility. One of the best things you can do for yourself is keep your positive attitude. You will be able to return to your activities before you know it and you'll be happier living life knowing that you are protected by your new buddy, Kevin. :)

Take care!
ela-girl

My Experience.

by turboz24 - 2008-06-08 12:06:33

All I can say is how my experience went. I was kind of like you, except my sudden onset of issues was Vtach.

I didn't initially have issues with the implant, sure it hurt some, but not that bad. It actually has hurt more in the long term that it did initially. I like you am I guess "fit", so I didn't have much tissue to hide the device in. I think in my case, I tend to irritate the muscle and skin that is stretched tight over the implant by a lot of physical activity. I lift weights 1-1.5 hrs 5 days a week, so it's guarenteed at some point during the week my ICD aches and I'm 9 months post-implant.

On what it looks like, let's just say I'm glad I work out to stay in shape and keep my strength up, and not for the look, otherwise I would have stopped working out immediately after the ICD implant.

You know you're wired when...

Your heart beats like a teenager in love.

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