Previous experiences?

wow!

by Tracey_E - 2020-04-02 12:06:42

No experience with ARVC or transplants whatsoever but I wanted to welcome you. Glad you found us. That's a whole lot to deal with at 17! I'm congenital also, but I got lucky and the pacer pretty much fixes what's wrong for me. 

I wouldn't worry about long term implications right now. It's more important to get you stable and the ICD not firing. Once things are stable, you can talk to your team about long term decisions. 

I remember when I was your age, my parents and the doctors did a lot of talking over my head. I had to learn to speak up, to let them know that I wanted to understand what was going on and participate in the decisions. 

Good luck to you.

Yikes!

by AgentX86 - 2020-04-02 20:16:36

I have no experience with an ICD firing but as mentioned in anothe post today, I was awake when they performed a cardioversion on me.  Same sort of thing, except it's with the electrodes on the outside and because of that, more juice (100J).

One contributor here calls the ICD firing the "Jesus Jolt".  From what you've said, it sounds like you'd agree with that name.

Sorry to hear of your problems, particularly at your age, but keep looking forward (hard to do, I know).  As Tracy said, you really need to understand exactly what's going in in your body (not that you don't).  Since you're 17, your parents probably get the final word but you can make sure your wishes are at least heard. ...in no uncertain terms.

Welcome to the club (that wanted no part of).  Hope you stay around and contribute.  We occaisionally get some young people through here and it would be good to have regulars who can talk from their perspective.

ICD shocks

by islandgirl - 2020-04-02 22:03:18

I have an unknown problem with my heart where it keeps generating extra electrical pathways since 1999.  I have had an ICD since September 2016 due to a cardiac arrest for unknown reasons.  I had a pacemaker for about 1 1/2 years before that for a slow heartbeat.  Luckily the pacemaker had documented the whole event, so there was no question with what caused the arrest/30 min of CPR.  I had been shock free until December 12, 2019.  I had been having 'paced out' ventricular tachycardia episodes for about 6 weeks before the Dec. 12 cardiac arrest/shocks, with rates up to 500 bpm.  I got shocked 4 times, lost consciousness after the first shock.  Luckily I was with friends, so they could call for help.  I regained consciousness after the 4th shock.  I had 1 vtach run and 3 vfib runs, with 20 sec. of asystole.  It felt like I got kicked in the chest by a horse!  It did sound like a bomb going off.  My freinds said they didn't hear any noise.  It hurt so bad!  I just started sobbing, from fear and pain, as I knew why I had gotten shocked.  They sat me down and that's all I remember.  My chest was so sore afterwards, lasting several days.  My reasons are unknown and my dr. said I can expect another shock.  Let us know how things are going.  I feel fortunate to have the technology to keep me alive.  Keep in touch!  Glad you found this group.  You may also want to check out a site called inspire.com.  There might be others on that sight with your heart condition.  Best of luck.  

Welcome to the site

by Booster - 2020-04-02 23:51:09

I had to google ARVC to see what it was but still not sure of the effectiveness of treatments. I’ve been on amiodarone off and on since 06 and haven’t noticed any long term effects. Had first heart attack at 34. Worked as a full time firefighter for 11 more years till retirement. I’ve been shocked multiple times including multiple shocks.  Single shocks I’ve always said they feel like a jolt (it was the full 35j). On multiple shocks I’ve had them take me to my knees. 

Im a big believer that you can live your life or let this live your life. I do still have my bad days but a lot more good days!

Wishing you all the best and talking to people will help tremendously. 

Getting the shock

by Hula - 2020-06-22 09:44:50

I was asleep when I got my shock, heart rate 217. Sat up in bed with a karate ha sound. It woke my wife up, said I must had had a dream,yeah maybe I was in a fight. I said maybe I got a shock was told to back to sleep. Dr. Called a couple of days later. I've been scared before motorcycles, sharks, guns, falling off cliffs. So don't worry the icd  will help you get through it. I forget about mine till it's pill time. Good luck! You can have, The swim team members check it out at your shave parties. Let them tap on it for educational fun.

I’ve been in your shoes

by Katelyn - 2020-06-23 02:03:34

I was 17 when I got my first icd, I'm now 34, on my 5th ICD and a survivor of 16 shocks (including a series of 6 in one episode). I remember what it was like at your age with such a heavy burden to carry. I remember getting my first shock when I was away at college without any family or friends. It's tough, but hang in there. You will get thru it.  Don't keep it inside. Find people to talk to and share with, your mental health is just as important to your survival (phantom shocks and ptsd were things I had to learn to overcome).  I am now married and have two beautiful children, one who turned 5 yrs old today. <3 We are so lucky to have a second chance at life, never lose sight of that privilege.