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. 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 calcification and afib started creeping in. By January it had progressed and now I've reached the limit of my fitness I think. The options presented there were for I think TAVR, not sure. They called it something different but said I wasn't a good candidate in any case and so the idea was just to deal on 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 we are doing another OHS in October and complete valve replacement at Mt. Sinai. They have never seen a valve fail after a year-no one knows why. It could be literally anything. I don't know. I stopped the immunotherapy a few months ago--for several reasons, but my heart was one of them. They say it's not shown to cause valve problems, just endocarditis. But honestly, no one really knows about these other cancer drug effects, especially the rare ones.