Cardiac Amyloidosis

Posted by mookiencoco @mookiencoco, Apr 4 2:02pm

I went to the hospital in August of 2024 and had pulmonary edema. After a PYP scan, Nuclear test, genetic test and recently a right heart cath and heart biopsy it was determined that I have wild-type amyloidosis. I will be doing a CPET soon and see where to go from there. I am a white male and turned 56 Feb. 28. I am in Charlotte at the Sanger Heart and Vascular Institute. I am looking at my options including being treated at the Mayo Clinic in AZ. Mike

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brumasterj | @brumasterj | Apr 5 12:47pm

Mike, wow that sounds like a big one that definitely needs to have the right facility caring for your diagnosis!
Highly suggest finding a teaching hospital that deals with higher volume cases such as yours!
Best of luck to you in finding the right care!

joycehocm | @joycehocm | Apr 16 9:52am

Hi - My HOCM doc is at Johns Hopkins which is a COE. I was tested for amyloidosis early on in my diagnostic steps for a few reasons. It turns out I did not have it. I do know, however, that if I had, my Hopkins cardiologist would have referred me to their "amyloidosis team," which means that there is such a thing. They also said the course of treatment is very different for HOCM and amyloidosis. May you find the best care possible!