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Posts (5)

Aug 3, 2018 · Transplant Drugs Offer Cure for Farmer With Rare Heart Disorder

See my post above. I am receiving amazing treatment through Brigham and Women's, and I have met another survivor who is seen at MGH. Living in this area no doubt saved my life. I would be happy to talk with you or anyone, and pay it forward from the GCM folks who helped me in the beginning. Again, join the Myocarditis Foundation. They provide incredible support and give grants. One grant has found a substance in blood that identifies GCM and the recipient is working on a blood test to more easily detect this. The head of the MF is working on educating ER personnel on warning signs for GCM to lower the mortality rate.

Aug 3, 2018 · Transplant Drugs Offer Cure for Farmer With Rare Heart Disorder

Not responding to my own post, but to the article!

Aug 3, 2018 · Transplant Drugs Offer Cure for Farmer With Rare Heart Disorder

I am the original poster, and asked my doctor this question. He said it was from cutting back on immunosuppression and other meds too soon. I am now 18 months out and doing great. I encourage everyone to join the Myocarditis Foundation. They are amazing.

Jul 26, 2017 · Transplant Drugs Offer Cure for Farmer With Rare Heart Disorder

Hello, GCM survivor of 6 months here and doing well. I am wondering what the 23% of folks who do not survive at the one year transplant free mark eventually die of. It is a return of the GCM? Glad to find this board!

Aug 20, 2017 · Transplant Drugs Offer Cure for Farmer With Rare Heart Disorder

This is very encouraging to me! Thank you for sharing.

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