I am blessed to be the wife of the love of my life and a proud mom to two extraordinary boys we adopted in 2013, now 15 and 13 years old. Our dog, Snake, may raise eyebrows with her name, but she is a loyal friend who listens without judgment. We are a family that thrives on adventure; despite our challenges, we continue to move forward with determination and joy. Through it all, our unwavering faith serves as the anchor that guides us on this incredible journey.
I had a vision of my life, and transthyretin amyloid cardiomyopathy (ATTR-CM) was never part of that picture. In March 2020, my world came to a sudden halt when I received my diagnosis. I was already familiar with the disease from watching my father’s journey after his diagnosis in 2009, which led to his passing in 2010. My thoughts turned to how different life would be for my husband and our children.
In 2018, I started retaining fluid, but no one could determine the cause. At one point, I gained about 25 pounds in a month, and my stomach became rock-hard. My family doctor referred me to a lymphologist, but my condition continued to worsen. I experienced shortness of breath and severe fatigue, which prompted a visit to a cardiologist. An echocardiogram showed thickening of the left ventricle, but ATTR-CM was never considered as a diagnosis.
It was my sister who pointed out how my symptoms mirrored our father’s. Despite witnessing his struggle, I couldn’t see the connection. Fear kept me silent about our family history, as I worried it might complicate health matters. With my sister’s encouragement, I finally opted for genetic testing.
Learn about the signs and symptoms of ATTR-CM
The test kit sat on my kitchen table for two weeks before I found the courage to send it in. When my family doctor called with the positive result, I felt a wave of dread—I thought I was going to die. At the time, she wasn’t well-versed in the disease, but her determination to learn rivaled that of the best cardiac specialists.
Receiving a terminal diagnosis can lead you down two separate paths, and I decided to figure out how I wanted to respond. I had to choose between wallowing in my lost vision or embracing the new life unfolding before me. Regardless, ATTR-CM was now a part of my reality.
What I wanted most was control. I wanted to manage every aspect of this disease. However, one thing ATTR-CM teaches you is that you ultimately have no control. As part of my journey to regain my life, I focus on educating others. For two years, I went from doctor to doctor without knowing what was wrong with me. Early diagnosis is crucial because treatments are available to slow the progression of this disease. By educating others, I feel I am making a difference and continuing the work my father started.
Through all of this, my faith has strengthened, as has my marriage. My husband is a daily reminder that vows are meant to be lived, not just spoken. I treasure every moment with him, our boys, and my family. Time has become something to cherish deeply.
