In 2018, I had what I thought was a particularly bad case of bronchitis. As I regularly get sick in the winter, I didn’t think too much about it, except I was unusually weak, and tired. I also started sleeping in a chair, as I couldn’t breathe lying down.
When I finally saw my Internist after 3 months, she noted the fluid in my legs and brought in a cardiologist. After my EKG, he immediately suspected ATTR-CM and referred me to a specialist at the Cleveland Clinic. Like most people, I had never heard of amyloidosis, so like many, I googled it and the first thing I read was “amyloidosis is a fatal disease with a life expectancy of 2-3 years after diagnosis” YIKES!
When I saw the amyloidosis specialist a week later, and after a complete series of tests including ECHO, MRI, bloodwork, and genetic counseling, he made the diagnosis of ATTR-CM. He reassured me that while there are no cures, there are several medicines on the horizon, Tafamidis being one of them. He started me on Diflunisal. In November 2018, I started Tafamidis, as part of an extended trial. I am now taking Vyndamax. I am also in a blind trial Helios-B.
Today, I’m doing OK. It mostly affects my stamina/energy although I can still do just about everything, just not like I used to. I am so grateful to the Cleveland Clinic for my quick diagnosis and ongoing treatment.