Mitral Stenosis, Joined March 18, 2023
Mitral Stenosis
Joined March 18, 2023
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I had the mitral ...Read more
I had the mitral replacement March 30, 2023. All good. Then I got an endometrial cancer diagnosis, which spread in the month between the heart surgery and the hysterectomy. But we got rid of it.
I had chemotherapy + immunotherapy then radiation and still having this immunotherapy drug from Merck (Keytruda) which is specialized for BRACA cancers...I've had 8 does, the chemo part is done, but I still have a bunch of these (not sure how many) every 6 weeks.
My new valve is calcifying, and didn't really last a year. It's the animal one. I'm doing coumadin and concor, to keep the blood from pooling on the valve. But it's not ideal and my INR went down to normal levels--I was away in the US--and had no health care there although now have Bluye Cross but no doctor. I've just had an exhausting 23 hours of afib. There don't seem to be many options for me.
I figure it could be 1, the port, 2, the keytruda side effects, or 3, that my port looks infected and the infection could be spreading through my body. I've been put on antibiotics. Or it could be something else. Mt cardiologist said "one in a hundred" people has a complication like this.
My excellent middle eastern insurance (which was French) was sold and has now bailed on me, so I'm not beholden to the Cleveland Clinic Abu Dhabi any more. In the US, I have Blue Cross through New York State of Health. The immunotherapy is insanely expensive (under patent for two more years.)
My question is who is considered absolutely great, in the US, in New York if possible, maybe Mt Sinai? I need someone specializing in mitral valves, and very complicated scenarios. Does this exist? I still love my heart surgeon in Abu Dhabi, and I have two cardiologists in the UAE, but none of them are familiar first hand with options in New York.
I will be back in July and trying to line up someone to see. Had thought I would have a procedure but apparently not, and the reasons make sense, but......anyone have a recommendation?
I hope the tide changes in your favour soon, you’ve certainly been through enough. 🙏🏻❤️🩹