ICD went off for the first time (and then 10 times more)

Posts from Jan. 1, 2017 to the present. Plus important announcements. (ICD warning sounds)

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rogue2ironman
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Joined: April 7th, 2016, 6:13 pm

ICD went off for the first time (and then 10 times more)

Post by rogue2ironman » October 6th, 2017, 11:47 am

Hi all,

It's been over a year and a half since I have posted or even logged back into this website. I was hoping that I would never do it again, having been frustrated that I even had to get the ICD in the first place. Now I find myself on the verge of getting a septal myectomy...

After I got diagnosed with HCM back in Feb of '16 and getting my ICD implanted in March of '16, I didn't work out until almost October of '16.. and even then they were light workouts. Well I decided in Feb. of this year that i was done. I was done being tired. I was done being out of shape. I was done using my HCM as an excuse to not workout. So i joined a CrossFit gym.

I did CrossFit 5-6x/week with virtually no problems (yes I was on a beta blocker and another pill to help with my gradient) for 7 months. I would sometimes have to put my hands on my knees when we were going hard and try and slow my heart rate down a little bit.. but I always pushed through.

I was stopped in my tracks a few weeks ago. We had just gotten back into the gym from our SIMPLE warm up jog.. I felt fine during the jog, but once I got back into the gym and was walking over to the area to stretch I suddenly dropped. I only remember waking up to everyone in the gym surrounding me saying that they think my "thing" went "off." Of course they had already called 911 and paramedics ended up taking me to the hospital (even though I strangely felt fine as soon as I woke up).

The Boston Scientific rep came to the hospital to read my ICD and casually told me that, yes, "this device saved my life this night." I still didn't grasp the gravity of it. I ended up going out of town for a wedding the next few days, so I didn't workout. When I got back home, I went straight back to the gym. Worked out HARD for three days with no problems.. Until i showed up on Friday. We had not done any running in the workouts from Tuesday, Wednesday, Thursday, but decided to warm up with a light jog on Friday.

Same thing happend. Only this time was a little worse. Went on the jog.. felt totally fine, got back into the gym, walked over to the stretching area... only to go down again. This time, i vaguely remember talking with people surrounding me, but I didn't know I was in the gym. When I "woke" up, I was so confused because I thought I was already awake.. I had no clue I was at the gym and it took me a minute to gather myself.

Same deal. Everyone was surrounding me, they were frantic, and the coach was on the phone with 911. When the paramedics got there, I refused to go to the hospital because I felt okay (minus my chest feeling like I got punched pretty hard) and didn't want to have to pay $1,000 to wait for another Boston Scientific rep to come out and tell me that my ICD went off. It was a Friday evening, so I figured I would just go home and turn on that wireless device that can read the ICD while you sleep.

I got a call from the doctor's office on Monday morning asking me to come in that afternoon. No joke, the doc came in and said, "Good to see you, son.".... ummm what? He said it like he was surprised I was alive? He then told me that my ICD went off 11 times on Friday night and that I nearly didn't come back from the severe VFib I was in for over 2 1/2 minutes.

Then the electrophysiologist came in and told me that he immediately wanted to put me on new medication and monitor me in the hospital for the new few days..

So here we are. Back to the frustration. Back to the confusion. Why did it go off twice within a two week period? Why did it never go off when I was doing some of the hardest workouts designed? Why only after an easy warm up run?

These are all questions I couldn't get any definitive answers to because Hypertrophic Cardiomyopathy is so "unpredictable" and "different" for each person that has it. Hence my frustration. I went from my doctor telling me back in January that CrossFit was fine if my body was telling me it was fine, to now him telling me that I can go on "walks". I'm only 28 by the way and have always been an athlete and in shape. Going on "walks" is not exercise to me.

All in all, I think it's time I really consider getting the septal myectomy surgery. If I can get that surgery and go back to a semi normal life of working out and not stopping to put my hands on my knees after climbing a flight of stairs after one beer.. then I'm all in.

Have any of you gone under the knife for that?

-Cory

dick
Posts: 317
Joined: September 4th, 2013, 11:49 am

Re: ICD went off for the first time (and then 10 times more)

Post by dick » October 6th, 2017, 2:15 pm

Can you spell second opinion (from a really, really well known surgeon/hospital team)?

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mrag
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Joined: February 10th, 2009, 4:56 pm
Location: The Former Mushroom Capital of World when America was great

Re: ICD went off for the first time (and then 10 times more)

Post by mrag » October 6th, 2017, 6:49 pm

Cory...I've not a clue where you're from (Mongolia, Ohio, DC). I know you're 28 and an exercise nut with a "pretty unique" heart condition. I would do a search here on this "septal myectomy" condition as there may be a wealth of personalized information available (ESPECIALLY IF USERS CONTINUALLY CONTRIBUTE TO THE FORUM, HINT, HINT, HINT). You may find a nugget.

I agree with the second opinion stuff. This is standard for our favorite ICD fix, the ventricular ablation. That also includes using ONLY EPs that do this stuff on a regular basis. There are not that many so don't be fooled. At 28, you want an EP that does these things on a regular basis probably in a BIG CITY RESEARCH/UNIVERSITY HOSPITAL and is quite familiar with working with YOUNG ATHLETES. Interview the doctor!

And if you voted for...nevermind ;-) You're not in a good place right now, good luck.
nonsense area-does anyone even read this area any more

Leedur
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Joined: May 24th, 2015, 10:25 pm

Re: ICD went off for the first time (and then 10 times more)

Post by Leedur » October 7th, 2017, 7:01 am

Hey "rogue2ironman"----quiet an experience you have had. Having been active in a gym for about 55 years, I can understand some of your feelings and frustrations....especially when I was younger. Have long ago had to tone down the intensity of exercise....it's not so bad and doesn't cause as many injuries, aches & pains.

I like to use the comparison of our bodies to a car....if the engine stops, then the car stops with it. Except with a car, you can put it in the repair shop and drive another. If your heart stops, it's over....or if it can be repaired, you have to be there through the process. If my car's engine was acting up, the last thing I would consider was taking it to a race.

Good luck with your treatment options.

mykidsmom
Posts: 3069
Joined: February 9th, 2012, 5:09 pm

Re: ICD went off for the first time (and then 10 times more)

Post by mykidsmom » October 7th, 2017, 7:35 am

well said Leedur....

You drew the short straw in this heart thing rogue, we all did here....but your still here thanks to technology and medical abilities, so you need to stop fretting about what you cant do...and concentrate on what you can.......my 14 year old grandson inherited the family burden with the heart too and he really has to play it by ear...there are some things he just has to do within his own capabilities and every month theres another new norm for him...for the most part hes able to do pretty much a lot...

so your glass is half full..just stop pushing yourself out of your bodies comfort zone..
I think.....Therefore I am.!!!!!

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Ozchrissy
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Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: ICD went off for the first time (and then 10 times more)

Post by Ozchrissy » October 7th, 2017, 8:20 am

I don't have HCM but I do have DCM. I have looked up septal myectomy and it seems like a pretty successful procedure.

I got this from Wikepedia and the stats look pretty impressive.

https://en.wikipedia.org/wiki/Septal_myectomy

I think personally that if I was given stats like these for a procedure then I would be making arrangements pretty soon to find out a lot more about it and getting as much information as I could.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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TruckerRon
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Joined: February 22nd, 2010, 8:52 pm
Location: Provo, UT

Re: ICD went off for the first time (and then 10 times more)

Post by TruckerRon » October 7th, 2017, 11:28 am

And here's another thought: Perhaps when we're pushing our bodies' limits we're doing damage that doesn't appear to affect things at that time, but does show up later when we're not expecting it, like during those relatively gentle warmups.

As for the procedure, I'd follow Chrissy's advice.

I hope we'll be hearing more from you as you make your choices and that you will share what you learn.
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

Heartbroke
Posts: 38
Joined: April 1st, 2017, 11:07 pm

Re: ICD went off for the first time (and then 10 times more)

Post by Heartbroke » November 11th, 2017, 12:07 pm

Corey you are so young to have this I don't know where you live but I am recommending you see dr David Delurgio at Emory saint Joseph's hospital in atlanta Georgia he is one of the top 5 electrophysiologist in the u.s.a. if anyone can fix your problem it's him this guy saved my life when everyone else gave up those shocks are horrible man. I got 84 in a 40 min. Period wide awake for every one of them.

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wen
Posts: 593
Joined: July 13th, 2009, 5:47 pm

Re: ICD went off for the first time (and then 10 times more)

Post by wen » November 14th, 2017, 2:34 pm

Cory,
I, too, have hypertrophic cardiomyopathy. I've had my ICD for 8 years now. I think there's probably a happy medium between no exercise and cross fit. I was told I could certainly exercise and that it would be good for me, however, heavy weights and super strenuous exercise are not a good idea. Maybe once they get your meds figured out, try to ease back into exercise a couple days a week with more reps and less weights. You wanna exercise your body without stressing it out! Best of luck to you!


Wendy
Left Bundle Branch Block
Non-ischemic Cardiomyopathy
V-Tach
ICD-Boston Scientific Teligen (2-lead) installed 7-7-09

dick
Posts: 317
Joined: September 4th, 2013, 11:49 am

Re: ICD went off for the first time (and then 10 times more)

Post by dick » November 16th, 2017, 6:47 pm

Is it only me? Am I the only one that sees red when some one (like rogue2ironman just for example) posts a situation, asks for help, support, guidance,
and or feedback and then NEVER responds or even acknowledges replies? If they (rogue2ironman) died, I'll' accept that in most cases as an appropriate response. But really, if this site is to be at all relevant and worthwhile, it depends on EVERYONE (even if its Robo or Mykidsmom or mrag) pitching in with feedback.

So I'm pissed. Contribute or get out is my mantra.

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