Hello! My name is Christine. I’ve been married to my wonderful husband for 35 years, and we have two children, ages 33 and 31, who have not been tested. I’m a proud Nonna to two beautiful granddaughters. I have one sister and two brothers.
I grew up in Wantagh, played sports throughout high school and into adulthood, and even coached volleyball. We were the Wantagh Warriors, and I was always proud to be a Warrior—though I never imagined I’d become one again in a very different way.
Today, I work as a bookkeeper for my husband, officiate volleyball for NYS, and watch our granddaughters.
My Amyloid Story Begins
My mom’s journey with amyloidosis began on April 14, 2016. She hadn’t been feeling well but tried to hide it, as she often did. After her primary care doctor noticed a change in her EKG, she finally told us something was wrong. When I checked her blood pressure at home, I saw the A-Fib indicator on the machine. We quickly got her in to see a cardiologist, and her echocardiogram showed “cardiac amyloid and hypertensive heart disease.”
No one explained what amyloid meant. When I asked, I didn’t get answers, so I began researching “amyloid deposits.” It was a disease we had never heard of—until it changed everything.
I learned that Columbia Presbyterian in NYC was a Center of Excellence, so on June 6, 2016 instead of going to our local ER again, I drove my mom straight to Columbia’s emergency room. If no one else was going to help, I was bringing her to the people who could.
She spent a month in the hospital—TEEs, cardioversions, an ablation, CCU—and I was even asked to sign a DNR. I knew I couldn’t, I knew my mom’s wishes. Doctors didn’t think she’d come home, and if she did, they said she’d be coming home to die. But she was released on July 1, went to rehab, and finally came home on July 21.
We returned for follow-up and genetic testing. The result? Inconclusive. How could that be? Her echo suggested amyloid, yet we were told there wasn’t enough information to say yes or no. We were left in limbo. My own cardiologist, who didn’t know much about amyloidosis but wanted to help, began monitoring me yearly with echocardiograms.