Trygve's Profile

Updated! I had no idea there was an issue with my heart, but my breathing had been labored since 2016, when I did chemo in NYC for Breast Cancer at Sloan. I had been told several times that I had a heart murmur, but when I asked what that meant, I was told "usually nothing!" I even did an entire program of pulmonary health at a NYU, and no one ever looked at my heart, I guess. I had no idea that childhood radiation for melanoma would try to kill me 30 years later. It was really a shock. I had been working in Oman since 2011, where I make frankincense essential oil, and on a visit to Dubai, at the end of 2022, had the good fortune of seeing a Spanish Cardiologist, Dr Jose Carlos Moreno Samos, who diagnosed it right away. I had thought the breathing issue came from my reconstruction! The diagnosis freaked me out but undoubtedly saved my life. Mitral valve completely calcified with complete stenosis. Heart failure, etc. I could barely walk across a room, afib, etc. I'm super lucky I didn't have a stroke or heart attack. The surgical report was horrifying. I had OHS at Cleveland Clinic Abu Dhabi March 30, 2023, and also had a diagnosis of endomitreal cancer, so another surgery followed 7 weeks later then chemo all summer and immunotherapy (Pembolizamab/Keytruda), and even more radiation. I stayed in UAE for 18 months doing this In October my echos started showing recalcification and afib started creeping in. By January it had progressed and the doctors at CCAD all seemed scared. I wasn't a good candidate for whatever procedure they were (reluctantly) talking about and so the idea was just to deal on the long list of meds until I couldn't and then we'd try this. No thanks! So I got Dr Adam's info from this website and so many kind and helpful people here. I went for a second opinion and I had another OHS in October 2024 and another complete valve replacement at Mt. Sinai. They also did a ring on the tricuspid, MAZE and I got a dual lead pacemaker. They have never seen a valve fail after a year-no one knows why. It could be literally anything. I don't know. I had great care at Mt Sinai and am back in the world. I had my knee replaced June 8......it's awesome as I needed for ages.