New to the club!

Hi all! I'm new to the club! I got a Boston Scientific ICD/Pacemaker implanted January 2019 because I had a SCA at work in December. It was a huge shock (no pun intended) because I'm a very healthy 33-year old woman. I'm so, so, so grateful that I survived. The doctors believe that I have 'Arrhythmogenic Mitral Valve Prolapse.' I've known about the "mild" MVP ever since I was a kid (and I saw a cardiologist once a year, just in case) but there was never ever a cause for concern! MVP is quite common but I believe MVP causing cardiac arrest is rare. I was very emotional at the beginning of all this but I think I'm coping pretty well now with my new reality. There are some triggers that still make me burst into tears. Reading the posts on this site has helped a lot! And I've also been seeing a psychologist who specializes in CBT methods - I highly recommend it!

I have a few questions...

1. Does anyone else here have Arrhythmogenic Mitral Valve Prolapse?

2. I know everyone heals at a different rate, but I'm almost 3.5 months post implant and my arm is still a bit sore/I can't move it perfectly (despite doing the prescribed exercises 3x per day). Is that normal?

3. For those of you who have ICD's, do you have any experience with strong emotions causing your pacemaker to kick in or your ICD to fire? (I experienced 1 shock 3 weeks post implant and I was heavily crying at the time).

Thanks for your support!


Hi Lildanishgirl

by stewing hen - 2019-04-28 20:55:59

I'm sorry no one has answered you yet. I just joined and I hope this isn't an indication of club members' usual participation - or in this case, non-participation! I also have an ICD but I can't answer your questions. I have congestive heart failure caused by aggressive chemo that I received sixteen years prior to my CHF diagnosis. I don't remember having any post-op issues such as the soreness in your arm that you are experiencing. And my ICD has never fired in the few years I've had it. I hope someone can answer and put your mind at ease!


by lildanishgirl - 2019-05-01 09:53:47

Thank you stewing hen! I appreciate your response. I have a feeling that not as many people have ICD's in this group. Most people seem to have pacemakers. That could be one of the reasons :) Thanks for your feedback!

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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.