Penny's Profile

Hi, my surgery also included sacrificing my SICD lead (Defibrillator Device lead), and 3 abandoned lead extractions were performed. We found out during my 6 week Echocardiogram and follow-up with my cardiologist that my mitral repair failed with moderate mitral valve regurgitation. My left atrium and left ventricle have been severely dilated for several years and my ejection fraction is currently 45%. We also discovered at my 6 week follow-up that I now have severe Tricuspid valve regurgitation. It was damaged during the lead extractions. My right atrium is now severely dilated and right ventricle is dilated. The SICD re-implant was, last Wednesday, September 4. I survived a Sudden Cardiac Arrest in 1988 and have needed a defibrillator since the age of 25. At the time of my SCA I was diagnosed with Marfan Syndrome. It is now believed that I have Loeys-Deitz Syndrome. I was negative for the two connective tissue genetic tests. It is my belief that my "type" of LDS has not been discovered yet. I am hoping to gain more understanding about treatments, and support for my heart valve condition. Thank you for taking the time to read my story.