DX--Sarcoid of the Heart and Lungs

My husband had SCA last October...survived after 3 difribullations. He has been diagnosed with Sarcoid of the heart (formerly also dx with Sarcoid of the lungs). Our cardiologist said they can't find anything else that could have caused what is happening to him. Every test has been done except the mapping.....but this is very risky for him because of events after his SCA. He now has an ICD and the medication he has been on (Beta Pace) stopped working....they changed his meds (to amiodarone and Mexilitine) and during the "change" he had repetitive shocks (60 in less than 24 hours). Luckily he was in the hospital when this happened. As a result he now suffers from PTSD and the side effects from his meds are awful. We are very fortunate despite all that has happened....a dear friend died last week--age 52...SCA--still waiting autopsy to know cause. This affects so many people and so many ages. The family members are at a loss to help and the victims of SCA are scarred (and scared) about the future. I am so glad Inspire came into existence....it's amazing how less alone we feel in our struggles. Thanks for listening.
Robyn and Bill P.