Cardiac Sarcoidosis

Hi!

Has anyone got cardiac sarcoidisis and is fitted with an ICD? I'm due to get one and was researching a bit online and saw that in some studies they state that patients with CS and ICD's are at high risk for ventricular arhythmias and of inappropriate shocks and device complications..

Is that true from your experience?

thanks for any input on this


3 Comments

Cardiac Sarcoidosis

by Gemita - 2021-03-14 16:10:58

Dear Carol,

https://www.pacemakerclub.com/search

I attach a Pacemaker Club link for you to check for other Sarcoidosis members, not a vast number of posts, but might be worth a read.  I have seen quite a few posts from members with Sarcoidosis over recent  months, and if you do a general Google Search under Pacemaker Club Sarcoidosis you will find more posts. 

Everyone is individual and what we see online is not always helpful and may cause undue concern.  It is true that if we need an ICD it is to protect us from a potentially dangerous ventricular arrhythmia or event but having Sarcoidosis doesn’t necessarily mean that we will suffer from more inappropriate shocks or device complications than those without this condition.  In any event if your doctors can keep your Sarcoidosis under firm control and maybe even see it go into remission, your situation may quickly improve, reducing the risk for ventricular arrhythmias.

I note you are on medication and feeling better which is great news.  Often the treatment is worse than the actual disease and I hope it does not prevent you from enjoying your activities.  I also see from your 2nd post that your doctors are saying that they are predominantly giving you an ICD as back up only which is reassuring.  Hopefully you will not experience any shocks but you will have the protection should you need help.  I wish you well and every success with treatment

cardiac sarcoidosis

by Carol7 - 2021-03-19 05:29:57

Dear Gemita

Thanks so much for your comments. Yes, it's true, actually I had almost no symptoms when I had the av block, just low pulse and very short dizzy spell. I only started feeling awful under all the medication....I have never in my life taken cortisone and much meds in general so that was a real bomb and I suffer from dizziness since the therapy started, slightly improved now after reducing cortisone. So life quality has actually become worse rather than improved with the meds because it wasn't at all bad before. Also with the therapy I started having arythmns wich I never had before, not even in those 2 weeks in hospital, they started alongside the therapy..pretty daunting....

i also had a single event of a short sequence of VT under therapy which seems strange, but that's the main reason now for me to get the icd. 

I spoke again to the cardiologist and he reassured me, as you said, that I shouldn't be worried about inappropriate shocks etc. It is true that CS patients do tend to expenerience more complications with icd's  but because I have a "mild" case I shouldn't have to worry about that. 

 

 

CS

by DMJ - 2021-11-23 02:57:26

Yes, I was finally diagnosed with Cardiac Sarc. after I have a super VT eposoide and was sent by ambulance to Brigham Womens in Boston since it was only bed available.  They finally diagnosed me and why I had complete heart block.  I was give Bi Ventricular CRT pacemaker with ICD.  My problems arose when my leads were corroded with sarcidosis granulomas and were not making proper connections.  I have them replace and new pacemaker in 2016 and no real problems since then.  I do have VT and do get paced out without shocks.  I have chronic systolic heart failure, atrial fibrillation, cardiomyopathy, VT and complete heart block.  My injection fraction has been as low as 17, so like my doctor says, it all can change from day to day.  I know I have done all I can do and have good doctors at Duke Hospital in Durham, NC.  The rest I leave to God and grace. MY sarcoidosis is currently not active and I'm not on treatment for it.

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