Mended Hearts Open Forum

ATTR-CM (Transthyretin Amyloid Cardiomyopathy)

  • 1.  ATTR-CM (Transthyretin Amyloid Cardiomyopathy)

    Posted 03-17-2021 09:10
    Has anyone on here heard of, or had any experience with, ATTR-CM (Transthyretin Amyloid Cardiomyopathy)? Here's my back story: I had open heart surgery coming up on two years ago due to a massive heart attack (my third heart attack) from 5 blood clots in my heart resulting in a CABG x3. Since my surgery, I have been back to the ER at least 25 times due to chest pains. Except for once when they found that one of the grafts had collapsed and they had to put another stent in (my 7th), they said they couldn't find any issue with my heart. They always tell me what it isn't but never tell me what it is. This most recent visit the cardiologist who has treated me every time I've been to the hospital told me that "some people just have constant chest pain". They say it's not my heart but whenever I have the chest pains I can feel it INSIDE my heart. I'm tired of every time I get hit with bad chest pains having to wonder "Is this it? Is this the one that has going to take me out?". Decided to do my own research and stumbled across this potentially fatal yet rarely properly diagnosed condition and found that I had every single symptom: fatigue, chest pains, shortness of breath, irregular heartbeat, tendon rupture in the calves and feet, bilateral carpal tunnel syndrome, gastrointestinal issues, shoulder, hip and knee pain, neuropathy and vision problems. EVERY SINGLE ONE! I sent an email to my regular cardiologist asking her is she could look into it but haven't heard anything back. It seems that doctors these days are scared to go beyond their comfort zone and look at anything that doesn't check all the usual boxes. Anyone on here have any info on it they can provide?

    Brett Temple
    Project Manager
    Sarasota FL