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Posts (11)

Tue, Jun 11 7:15am · Myocarditis in Heart & Blood Health

Michele, that is great news. Good luck with the surgery. I'll be praying for a speedy recovery. I met a man while in the ICU who had literally gotten a heart transplant a few days prior and he was doing incredibly well and feeling great shortly after surgery. I hope the same for you too. Yes, you are blessed to have Dr. Cooper as your cardiologist. My team knows him and they all reach to him for advice and collaboration. Maybe you'll be well enough to travel to the Philly event with the Myocarditis foundation later this fall. I'll be thinking of you and praying for you!!!!

Mon, Jun 10 8:01pm · Myocarditis in Heart & Blood Health

@helena4000 @michelecallahan @JustinMcClanahan there are also two events coming up with the myocarditis foundation. One is in a few weeks in New York and the other in the fall in Philadelphia. You can find out more about these events on their website. I’ll be attending the Philadelphia event. It’s for myocarditis survivors. I believe Dr. Cooper may be in attendance also. He’s considered one of the world renowned specialists on the disease. It should be a very informative session with the panel of doctors etc. I encourage everybody to look into it and see if it’s something For them.

Mon, Jun 10 7:56pm · Myocarditis in Heart & Blood Health

And no thanks necessary. We’re all in this together. I’m happy I can be of service to somebody.

Mon, Jun 10 7:56pm · Myocarditis in Heart & Blood Health

I simply caught a virus. It can be triggered by a lot of different things. I know a myocarditis survivors who got it from a reaction to vaccinations she needed before traveling to Africa .

Mon, Jun 10 6:39pm · Myocarditis in Heart & Blood Health

My condition, giant cell myocarditis, is also an auto immune response. Just like you, my own immune system attacked my heart. I was on the transplant list when I was in the ICU, but my heart made of recovery and I I have survived without a transplant. I was on a very similar regimen of medication. How else can I help?

Mon, Jun 10 6:36pm · Myocarditis in Heart & Blood Health

Yep! That’s my doc. I love him!!!

Mon, Jun 10 5:44am · Myocarditis in Heart & Blood Health

@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.

Jul 30, 2018 · Video Q&A about Myocarditis in Heart & Blood Health

Me neither. I'm so frustrated. I have been looking forward to this for weeks.