1. < Heart Rhythm Conditions

Anyone Experiencing Rhythm Issues Due to Cardiac Sarcoidosis ?

Posted by larry @larryst, Sep 9 10:39am

I was diagnosed with Cardiac Sarcoidosis 10/23. I had a CRT-D implanted but still experienced Ventricular Tachycardia. After medication changes and several times in the ICU my Sarcoidosis is in remission and heart inflammation is gone to allow VT Ablation. Is anyone still experiencing short episodes of v-tach ? Do they go away eventually ?

Thank You

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

jeniliz | @jeniliz | Sep 10 7:23pm

For 25 years, my Inferior Vena Cava and Superior Vena Cava have been sealed off due to cardiac sarcoidosis. My body developed an alternate arterial system which kept me alive. Only in 2024 did I develop Afib. I just had a cardiac MRI and will update you on the results on 9.13.24. Questions to be answered: Did my sarc progress causing the Afib? Is the Afib unrelated to the sarc? Which ablation or other treatment modality will my cardiologist choose to treat my Afib? Anwers on Friday, Septembe 13th. I have also enrolled in the Mayo Sarcoidosis Clinic so futher discussion on the relation of sarc and Afib is to come.

REPLY
1 reply
jeniliz | @jeniliz | Sep 14 1:39pm
In reply to @jeniliz "For 25 years, my Inferior Vena Cava and Superior Vena Cava have been sealed off due..." + (show)
@jeniliz

For 25 years, my Inferior Vena Cava and Superior Vena Cava have been sealed off due to cardiac sarcoidosis. My body developed an alternate arterial system which kept me alive. Only in 2024 did I develop Afib. I just had a cardiac MRI and will update you on the results on 9.13.24. Questions to be answered: Did my sarc progress causing the Afib? Is the Afib unrelated to the sarc? Which ablation or other treatment modality will my cardiologist choose to treat my Afib? Anwers on Friday, Septembe 13th. I have also enrolled in the Mayo Sarcoidosis Clinic so futher discussion on the relation of sarc and Afib is to come.

Jump to this post

I just had by appointment with my cardiologist. It turns out my sarc closed my heart off but did not progress from there. My cardiologist was relieved that we did not have to address cardiac sarc at this time. In fact, he wasn't even sure the sarc had anything to do with the current Afib diagnosis. He scheduled a CTA (Angiogram) and a stress test as well as an additional Echo Cardiogram for me. The advice was "Wait and see". I have to say I am amazed that, for the three months since my Afib diagnosis, I still have no idea when I am in Afib, how serious or frequent it is, or what triggers it. It seems a long time to live with something that could potentially cause a stroke with NO information on how to manage it. I am on 50mg of Metopronol and 10mg of Eliquis. I feel tired and weak most days but NO IDEA when AFIB is occurring. Any thoughts or reactions?

REPLY
1 reply
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Sep 16 9:19am

I'd like to invite @okieorangeblood who has talked about cardiac sarcoidosis on Connect in the past to share their experiences with @larryst and @jeniliz. @okieorangeblood, now that your sarcoidosis is in remission, have you had a chance to discuss your v-tach symptoms with your provider?

REPLY
1 reply
larry | @larryst | Sep 17 8:21am

I know I am early on post-ablation (< 1 month). So far they have seen 4 short, slower v-tach episodes with few if any symptoms. I know this can happen but it is concerning.

REPLY
lindy9 | @lindy9 | Sep 18 12:42pm
In reply to @jeniliz "I just had by appointment with my cardiologist. It turns out my sarc closed my heart..." + (show)
@jeniliz

I just had by appointment with my cardiologist. It turns out my sarc closed my heart off but did not progress from there. My cardiologist was relieved that we did not have to address cardiac sarc at this time. In fact, he wasn't even sure the sarc had anything to do with the current Afib diagnosis. He scheduled a CTA (Angiogram) and a stress test as well as an additional Echo Cardiogram for me. The advice was "Wait and see". I have to say I am amazed that, for the three months since my Afib diagnosis, I still have no idea when I am in Afib, how serious or frequent it is, or what triggers it. It seems a long time to live with something that could potentially cause a stroke with NO information on how to manage it. I am on 50mg of Metopronol and 10mg of Eliquis. I feel tired and weak most days but NO IDEA when AFIB is occurring. Any thoughts or reactions?

Jump to this post

If I had no idea when in Afib, means not bad enough to feel? When I had, I knew it, and do not need a test to tell me. As far as triggers, do you drink or eat ANYTHING with caffeine> coffee, chocolate, mountain dew, colas, energy drinks. If so, quit. 2 side effects of eliquis are anemia and low blood pressure which cause tiredness. Metopronol effects are tiredness and irregular heartbeat. Google any med for side effects.

REPLY
jeniliz | @jeniliz | Sep 18 2:22pm
In reply to @JustinMcClanahan "I'd like to invite @okieorangeblood who has talked about cardiac sarcoidosis on Connect in the past..." + (show)
@JustinMcClanahan

I'd like to invite @okieorangeblood who has talked about cardiac sarcoidosis on Connect in the past to share their experiences with @larryst and @jeniliz. @okieorangeblood, now that your sarcoidosis is in remission, have you had a chance to discuss your v-tach symptoms with your provider?

Jump to this post

I am about to enter the Sarcoidosis Clinic at Phoenix Mayo. After another echogram, a CT with contrast and a stress test, I will report what doctor says about Afib and Sarc and the relation between the two.

REPLY
Please sign in or register to post a reply.