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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).
Replies to "Hi. I have been diagnosed with lymphocytic myocarditis (through a heart biopsy). Medication wise, I'm taking..."
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?
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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.