Possibly having an ICD implanted after my 27 year old sister died suddenly

My sister and i are two years apart exactly (she just turned 27 and i just turned 25). We have both had seemingly random syncope episodes our entire lives. We both have had extensive cardiac workups that showed nothing. She died suddenly a couple weeks ago, presumably a sudden cardiac death as her heart stopped beating for no apparent reason. Everything looked normal on her autopsy too. I went back to my cardiologist and he has mentioned potentially putting an ICD in sometine soon. Even though my sister and i have never gotten a diagnosis. I'm nervous because it's still up in the air. I would definitely feel safer with one as my doctor suspects some form of a rare genetic syndrome that is hard to trace. Has anyone gotten an ICD for a similar reason? Or has any other helpful thoughts to share? 

Thank you. 

6 Comments

I would

by Tracey_E - 2019-01-03 19:27:49

So very sorry for your loss. How awful to lose her so suddenly. 

There are plenty of people who get icd's due to family history and nothing more. Better to have it and never need it than the alternative. Small price to pay for piece of mind. m

Sorry for your loss

by Brettmalec - 2019-01-04 02:01:20

I'm very sorry for the loss of your sister. I hope you are doing well. I would go ahead and get one just to know that it could prevent you from a sudden episode such as your sister. if you get one you'll adapt pretty quickly to the lifestyle.

Guardian

by Claracluck - 2019-01-04 05:42:56

I'm so sorry of your loss it must be a very confusing time for you, l had a dfib pacemaker fitted in March 2018 due to a viral infection no family history. I find it a comfort to have it although it hasn't kicked in yet! And it might never. Get all the information you can to make your  Mind up. Let us know how you get on. 

Life vest?

by BOBTHOM - 2019-01-04 12:48:18

There's something called a life vest. It's a wearable/removeable ICD.   Not sure how comfortable it is but you may want to look into it.

Sorry for your loss and good luck finding your answers.

Piece of mind

by MissyG - 2019-01-04 17:06:42

 

Sorry for your loss....

I was told by my first cardiologist that I am perfect candidate (dilated cardiomyopathy) for a pacemaker and he sent a referral to the doctor for a consultation. The doctor said that my ejection pump (32.8) was slowly going up and I was in the gray area for a pacemaker and didn’t think that I would need it. Was referred to advanced heart cardiologist doctor that brought up again I was a great candidate for pacemaker, once again I had a consultation. Well the pacemaker doctor seemed hesitate and I asked her why? She said she didn’t think I would benefit from it. Two different cardiologist recommended it and I am too young to wait around for my ejection pump to gradually increase with the risk of sudden death so I said “yes” I want the pacemaker/ICD for my piece of mind and my family.

You may never need it in the future but it’s there as a preventative and back up. So I would do it for piece of mind.  

hello

by zebrashadow - 2019-01-22 00:13:42

there are no words. thanks for sharing your concerns here. i am new to this site.

 

i am in similiar situation. my older brother, older by two years, did not wake up dec 28 2018. we are still upset and inconcolible. great guy. dna testing showed he had SCN5A gene, "brugada syndrome" and tests now show i do to. i will be getting a ICD just not sure how soon. 

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