Life After Diagnosis

Being diagnosed with Myocarditis can be a challenging process. Learning that you have a rare condition that affects your heart can be emotionally draining and stressful for you and your loved ones. But through this time, it is important to remember that you are not alone, and that many patients are able to live long, full lives free from the effects of myocarditis after their treatment. We have created a guide to help individuals as they look ahead to their life after a myocarditis diagnosis. 

The primary treatment for myocarditis is supportive care based on guidelines and recommendations published by major cardiovascular organizations in North America and Europe. Most times, cardiac rest and / or oral medications is all that is needed. Dependent on the severity of the case, administration of intravenous cardiac medications or the insertion of a temporary pacemaker may be necessary. In severe cases, extracorporeal membrane oxygenation (ECMO) or a ventricular assist device (VAD) may be necessary in the acute phase to allow the heart to recover or to serve as a bridge to transplantation. Immunoglobulin or corticosteroids have also been used in some acute cases to inhibit the immune response. 

Following the acute phase, surviving patients may recover completely or have long-term deficits. In severe cases, cardiac transplantation may offer the best chance for long-term survival.  For most patients, if they receive an early diagnosis, they are able to survive myocarditis without major medical support. However, 1-8% of those diagnosed with myocarditis require a heart transplant. Heart transplantation is generally reserved for patients that have attempted other medications and surgeries, but their condition has not sufficiently improved.

If you need a heart transplant or will need treatment for myocarditis, it is important to lead a healthy lifestyle in order to support proper heart function. Your doctor may recommend that you reduce sodium in your diet, avoid alcohol, limit fluid intake and quit smoking. It’s also generally advised to avoid competitive sports, and other rigorous exercise for a period of time after diagnosis, to be determined by your cardiologist. 

Here at Myocarditis Foundation, we are dedicated to providing accurate and up-to-date information to patients, their families, and medical professionals in order to further the scientific advancement of both the diagnosis and treatment of the disease. If you or a loved one has been diagnosed with myocarditis, or needs a heart transplant due to myocarditis, view our patient and family support resources.