Dennis Gallagher: A Long Road to a Hereditary ATTR Amyloidosis Diagnosis
My shortness of breath and fatigue started in 2015. It didn’t seem severe enough to see a doctor because I was in excellent shape and thought it was due to age, long walks or strenuous yard work.
Yet, I knew something was wrong. My wife and I both did.
When I felt like there was a rock band playing inside my chest, my wife, Darlene, drove me to the emergency room, where the nurse said, “Do you realize you’re in AFib?" That's the irregular, rapid heartbeat that can lead to blood clots. She then referred me to a cardiologist.
“You have AFib,” the cardiologist agreed. “I’m recommending a cardioversion.” I had the cardioversion and met with the doctor after the procedure. He told me the cardioversion worked, but I also had mitral regurgitation, where blood flows back to the heart when the mitral valve doesn't fully close. As I was leaving the hospital, I felt the pounding in my chest again and realized I was back in AFib.
I was unhappy with the first diagnosis, so I went to see a second cardiologist, who put me through a stress test. I had to stop the test because I was so short of breath and lightheaded.
“I believe you have cardiovascular disease and AFib,” said this cardiologist, who then prescribed a statin and a daily aspirin.
This wasn’t adding up. I was a healthy, strong guy with normal cholesterol and blood pressure, no diabetes or other heart issues, who suddenly had cardiovascular disease and AFib.
In June 2016, I went to cardiologist No. 3 and was told I needed a mitral valve repair; a catheterization had revealed a leaky valve in my heart. Open-heart surgery was necessary. After the surgery, I developed heart rhythm problems and needed a permanent pacemaker.
After completing cardiac rehab, I wasn’t getting better and the fatigue and AFib were getting worse. Adjustments were made to my pacemaker, but that didn’t help. My cardiologist was a gifted physician, and I believe he would have eventually figured out the real cause of my issues — but he suddenly passed away. I was left without a cardiologist and met with both of his associates for their recommendations. They had no answers.
In early 2017, I met with a sixth cardiologist. He spent more than an hour listening to my wife and I explain my medical journey. After reviewing my medical records and test results, he suspected my heart issues might be caused by hATTR Amyloidosis, a progressive disease that creates amyloid deposits in organs and tissues of the body.
He referred me to his colleague, an expert in hATTR Amyloidosis diagnosis and treatment. After a series of tests, he confirmed the diagnosis was hATTR Amyloidosis with a mutation of the T60A GENE and changed my medications. He took me off the statin and aspirin and put me on a blood thinner and diuretics. I was told I would need a heart transplant in the future. This disease could progress very quickly and was destroying my heart muscle.
Getting diagnosed with a rare, debilitating, often fatal disease changed our lives forever. We accepted what the future might hold and understood my only chance of long-term survival would be a heart transplant. We’re both positive people and we prayed for a blessing.
I’m happy to be alive as I was blessed with a heart transplant in May 2019. My wife and I will be forever grateful to the courageous family who gave us this incredible gift.
Life is slower now, with good days. My new heart is healthy and strong, and all my cardiac issues are gone for now, even though a heart transplant isn’t a cure. I battle with neuropathy every day; my lower legs, feet, fingers and hands tighten up, and I’m not nearly as strong as I was. But I’m learning to adjust to my physical limitations.
Staying positive and surrounding myself with fun people, I have found, is key.