Myocarditis

I'd like to invite @helena4000, @maryd, @michelecallahan, @kylehop, @msunderland to this discussion as they have all discussed myocarditis in one form in the past on Connect. You may also find this video Q&A that took place on Connect in the past helpful, https://connect.mayoclinic.org/webinar/video-qa-about-myocarditis/. I am sorry to hear about your frustration with not getting the timely answers you are looking for. Have they discussed with you what the purpose of tapering you off of the pericarditis medications is for and what the plan for that is moving forward?

No, the cardiologist just said that because they didn't find pericarditis in my most recent MRI scan, I am to taper off the pericarditis medication for the next month, but he didn't prescribe anything to manage myocarditis symptoms, which I still have. I'm very confused and scared. I think I am going to try to get a second opinion from another cardiologist. I have been in pain and have had breathing problems for 3 months now, and I feel like everything has been completely mismanaged by my doctors.

@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.

Hi. I have been diagnosed with lymphocytic myocarditis (through a heart biopsy). Medication wise, I'm taking Tacralomis (prograf) for the myocarditis (1mg 2x day). My understanding is that the myocarditis has caused heart failure. I'm taking metoprolol, losartan, spironolactone, bumex for the heart failure. I'm currently being evaluated for heart transplant at Mayo Jacksonville. I'm searching for anyone else that has been diagnosed with lymphocytic myocarditis to communicate with. My understanding is that it's caused by an auto-immune disease (my immune system "attacks" my heart).

Thank you SO much. I am very grateful. Is this the correct person? https://www.uchicagomedicine.org/find-a-physician/physician/gene-kim

I'm so sorry you are going through this and having to have a transplant. I'll keep an eye out. I thought I had encountered someone somewhere else who had actually improved to the point of getting off the transplant list. I will see if I can find it again.

Yep! That’s my doc. I love him!!!

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?

Thank you again! I've sent in a request for an appointment and mentioned a patient of his referred me. I hope that they get back to me. I can't express how much I appreciate your response. Were they able to figure out how you got it?

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 .