My journey with cardiac amyloidosis started shortly after I retired as a firefighter/paramedic in spring 2018. I started with trigger fingers—one in 2018 and two more in 2020. Also in 2020, I started experiencing mild shortness of breath going upstairs. I assumed I was out of shape after retiring in 2018. My shortness of breath increased gradually over time with going upstairs and exertion. Then COVID hit the United States, and I delayed seeking medical attention. Finally, I experienced shortness of breath during normal walking and slight chest discomfort. My wife took me to the emergency room. I assumed I would get a cardiac catheterization and then a stent and be home in a few days. My cardiac catheterization was perfect. No blockage. My heart valves were good. They diagnosed me with heart failure and had me follow up with a cardiologist.
My cardiologist put me on heart failure medications and would see me every six months. The cardiologist would write on my chart to keep my high blood pressure under control. I have never had high blood pressure. My blood pressure was normal, and then when this issue started, I had low blood pressure. My daughter, being a nurse, convinced me to go to a bigger hospital outside of my home city. In June of 2024, I went to the University of Michigan. On my first visit, the cardiologist told me he thought I had amyloidosis. The next week, we had the test and blood work to confirm it was amyloidosis. Genetic testing followed to show I had wild-type amyloidosis. The cardiologist wanted me on Vyndamax, but my insurance denied it. Fortunately, I was able to switch insurance in September 2024. I found an insurance that would cover the Vyndamax, but with a high deductible. I see my University of Michigan cardiologist every three months. He attempted to get me on a medication/injection that slows the misfolding amyloids from coming out of the liver, but my insurance denied it. I’m currently in the CRISPR Phase 3 study. It was one infusion that is supposed to slow the production of the bad amyloids. In 2025, I started with bilateral carpal tunnel. I had one surgically repaired in December 2025, and the second will be done in April 2026.
When I was first diagnosed, it was difficult. Everything you see on the internet tells you that you have about five years to live. But after further research, I found that new treatments are extending patients’ lives, and I’m confident a cure will come. My family, especially my wife and daughter, have been very supportive. A friend told me, “Faith over Fear.” I remind myself often of this phrase. I want future patients not to believe everything on the internet. Most of those articles are old. Luckily, my wife and daughter were my patient advocates. Fortunately, the pharmaceutical companies are researching hard to find a cure. I think more people have had or currently have this disease that is misdiagnosed. I feel good. I get tired and experience fatigue, but I am able to enjoy my family. I have two kids and five grandkids, with number six coming any day.
