New to the ICD world

Hi Everyone,

About 3 1/2 weeks ago I was fitted with a CRT-D. The reason for the device was, I had a bad episode of 3rd degree heart block with a 33.7% EF. The doc was saying that I may have ARVC, which I was told is a genetic disease. The doc also said that he is not entirely sure if I have ARVC. No one on any sides of my parents had  SCA, pacemaker, or have dropped dead from a heart problem, so that's why the doc is uncertain about the ARVC diagnosis.

I notice that when I go to bed, I wake-up feeling weak and not myself. My low heart rate or heart block episodes seem to happen when I was sleeping. I snore loud, but I do not have apnea. I am nervous for some reason and have a hard time accepting the fact that i'm 41 yrs old, had an extrememly active life, and did 25 years in the army with no issues prior. Only recently I've been feeling really ill with the block and I think the ICD is a good fit for me. I have a ton of questions, but it might be better to discuss those with my cardiologist. I have some moderate to severe scarring in my left and right ventricles. Does the heart eventually rejuvenate after the ICD is installed?

Thanks!


3 Comments

Rejuvination

by AgentX86 - 2019-12-23 22:10:25

I don't know much about ARVC but it seems that it causes fibrosis of the ventricles, which causes arrhythmias and probably your low EF. 

You say that you think your heart block happens at night.  Has your cardiologist had you use a Holter monitor to see exactly what's going on?  A pacemaker will almost certainly (as soon as I say "will", someone will come up with a counterexample ;-) take care of heart block.  With your low EF, a CRT can help synchronize the ventricles and the -D part (defibrillator) is prescribed for those with a low EF to mitigate SCA.  The CRT may get your EF up but nothing is going to reverse the damage that's already been done.

My suggestion is to learn everything you can about pacemakers, CRT-Ds, and your condition as possible.  This formum is a good place to start.  From there, Internet searches on specific issues can broaden your knowledge.  When you'll have some intelligent questions for your cardiologist.  This does at least two thing.  One it gets the important questions answered in your limited time with your cardiologist and just as important, it'll demonstrate that you're willing to take charge of your treatment and he'l most likely be more open about it.  This the whole idea behind "informed consent". It really is in your interest to educate yourself.

Challenges

by Gotrhythm - 2019-12-27 15:45:13

I kind of doubt if a CRT-D could "rejuvenate" the heart. There is something called "remodeling" of the heart, that happens sometimes, for some people. I wonder if that's what you're thinking about?

I have no idea if it's possible in your case. But I expect, in any case, it's far too early to know.

At 41, heart issues come as a great shock and call for re-thinking of practically everything. Somehow, there's something about heart issues that seem more personal, more about who you are and what you can expect than, say, kidney problems.

AgentX86's advice is good. Learn all you can. You have a double challenge: a rare condition and a pacemaker. The more you know, the better questions you will ask, and the better you will be at managing your life and your condition. I don't know if knowledge is power, but it adds greatly to self-confidence. We might not know about AVRC, but there is a wealth of information and understanding to be found at Pacemaker Club.

I also hope you will find someone to talk to--someone in addition to a partner or spouse. Your life has just become different from anything you ever thought it would be. That means you'll need to take time to take stock of your situation and sort things through.

 

 

ICD

by Ancient1914 - 2020-01-05 21:14:52

Hi, I'm about to get my 4th ICD after 21 years of living with them.
Along with my ICDs I have been on Amiodarone for the same length of time.
This drug has probably kept my arrythmia under control but caused my thyroid and parathyroid to become diseased. Had them removed and now take more drugs to compensate.
Have just stopped travelling the world for business and never once let my ICD cause a problem. Never went through the Security Arch Way always had a manual pat down.
Magnetic fields are an issue.
I have had 4 occasions when my ICD has fired to rectify VTAC and have had 3 cardioversions for AF.
My biggest problem today is lead fatigue. I have to have one replaced this year.
Best of luck
Ancient 1914

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