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← Return to Cardiac Amyloidosis
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Heart & Blood Health | Last Active: May 17 12:52pm | Replies (14)
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Hi Bobby, I have not heard of that condition but have learned that when it comes to the heart there are many specialist. I would plan on at my next follow up ask plenty of questions, I know when I was going thru a blood issue the Doctors at Mayo were very patient to explain the issue with me in layman's terms. As they say knowledge is power and at least for me it was a relief to understand a situation that I was confused about.
Replies to "Hi Bobby, I have not heard of that condition but have learned that when it comes..."
I'm just looking to hook up chatwise with others diagnosed and or taking the $250k per year orphan drug Vyndamax.
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The surgery was for hypertropic cardiomyopathy and the andurism. The heart tissue was in essence a biopsy which after weeks was determined to be amyloidosis. The cardiologist sent me for the nuclear test. The nuclear test contradicts the biopsy. Physically I am told that I am much healthier than others. But the fact remains that the biopsy and nuclear imaging are in conflict. The results of the studies show the drug vyndamax to be only marginally better than placebo. Who would pay $250,000 for that drug?