@helena4000 @JustinMcClanahan
Hi Helena, I am a adult female Giant Cell Myocarditis survivor and live in the Chicagoland area. I credit the Advanced Heart failure team at the University of Chicago Medicine for saving my life. I was literally dying at another hospital in the area (they were ill equipt to handle a myocarditis case) and transferred to U of C in the nick of time. Unfortunately, I don't believe many doctors know how to treat Myocarditis. I'd be happy to recommend Dr. Gene Kim to you as he is the cardiologist I see on a routine basis. Dr. Uriel oversaw my care when I was in the ICU. There are drug therapies that can help reduce inflammation. There are additional tests you can have too to understand how well your heart is pumping (ejection fraction numbers) that are important to know too. Eat blueberries and spinach as they are high on antioxidants which help manage free radicals from radiation. I know you're scared, I get it. My first step would be to change doctors and hospitals. Let me know how else I can help.