Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

June 12, 2017

Transplant Drugs Offer Cure for Farmer With Rare Heart Disorder

By SharingMayoClinic

Diagnosed with a severe heart condition, Hal Stahl turned to Mayo Clinic, where an expert on the rare disease offered Hal a unique treatment alternative that made all the difference.

Diagnosed with a severe heart condition, Hal Stahl turned to Mayo Clinic, where an expert on the rare disease offered Hal a unique treatment alternative that made all the difference.

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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!

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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.

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

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

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Glad to come across this. I am a GCM survivor of 7 months, receiving treatments at the Beth Israel in Boston, and based on Dr. Cooper amazing work. Dr. Cooper if you see this. Thank you! You have given me great hope for survival. The Doctors in Boston are wonderful and never stop applauding Dr. Cooper for providing a roadmap for efffective treatment. I know I’m part of a very small club, but I’m happy to interact with any one dealing with this disease.

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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.

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