Lee's Posts

Hi I’m about to turn 71 and have just been diagnosed with having a quadricuspid aortic valve with severe regurgitation and mild regurgitation with my mitral valve and bicuspid valve. I’ve had problems with chronic fatigue for years, generally very active and healthy but in the last five months began having dyspnea with exertion, spells of dizziness, increasing arrhythmias, and angina. My PCP heard a murmur in March. The TTE showed moderate AV regurgitation and moderate AV calcification, normal ejection fractions. My PCP blew this finding off and only upon my insistence referred me to a cardiologist. The cardiologist ordered a two week heart monitor ( still don’t know those results) and three days ago did a TEE diagnosing this rare congenital QAV and said I was going to need surgery. Considering my increasing array of symptoms I feel finding a cardiac team with experience in possible multiple valve replacement and/or valve repair is crucial and urgent. I also have alpha gal syndrome which complicates this scenario. I live in Arkansas. I’ll need to go to a top notch center and hope to find a surgeon and cardiac team who has expertise in this rare anomaly. Anybody out there have advice or recommendations? Thank you in advance.