Living in anticipation of possibly developing cardiac amyloidosis
A positive genetic test has me reconsidering how I spend my life
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A good friend of mine sadly passed away last month in a hospital in New York City. When I received the news, I couldn’t believe it. It took a few days to swallow the bitter news, and perhaps several weeks to digest it.
During that time, I thought about my own medical update I had wanted to share with her. It wasn’t urgent, and I figured I would bring it up when the time felt right. I never could have foreseen that she would face her own health crisis and leave the world in such a distressingly short time.
It felt as though I were on a slow train, making all the local stops, as I pondered how my life might change. On a parallel track, she was on an express train that dashed past me in an instant. I never got the chance to have that conversation with her when the time was right.
Knowing is a choice when the answer is still unknown
When my mom was diagnosed with cardiac amyloidosis in June 2025, her cardiologist recommended genetic testing for her children. I had read about the possibility of the hereditary type in my research, but I hadn’t paid much attention to it at the time, since it is less common than the wild type.
At a routine cardiology visit in November, the doctor shared my mom’s genetic test result: It was positive. I happened to be in Taiwan and heard the news in person. My first reaction was to get myself tested as soon as possible. Later that month, I received my own result, which was also positive.
That small possibility quickly became a reality. A friend back home who knew about the test checked in with me, and after hearing the result, they asked, “Wouldn’t it be better not to know?”
The question made me realize that knowing was a choice I had made almost subconsciously. I understand why some people might choose differently. The positive genetic test doesn’t tell me whether I have the condition; it only means I may develop it. I am left with the anticipation of something bad that might happen in the future.
Living with anticipation
The anticipation undoubtedly brings fear and anxiety. I started seeking medical advice, paying perhaps too much attention to every possible symptom, and thinking about what I would like to do in one, three, and five years.
In a good way, the same anticipation also encourages me to care more deeply about what truly matters and to focus more intentionally on the present moment.
This was the news I had planned to share with my late friend. I knew she would have made me feel heard and helped me see things more clearly. But instead, I received her news first — the news of her death.
As I processed the shock, I kept thinking about how ironic life can be. I had just begun to contemplate new plans in light of a potential illness. My friend’s illness and death unfolded too quickly for contemplation. I could not bear the thought of what she might have, or might not have, planned during those few weeks.
At the end of the day, we are all simply taking a ride through life. Our anticipation and planning cannot change what will happen. They are only our response to what life throws at us. They reveal who we are, and sometimes help shape who we become.
The present moment
If I had had the chance to share my news with my late friend, I imagine she would have responded in her usual, no-nonsense manner — quick to empathize, and just as quick to turn it into a celebration of togetherness.
I am saddened that I will never see her reaction. Yet, in some way, she has already left me a profound lesson: There is nothing more meaningful than living in the present moment.
Will I develop cardiac amyloidosis? When might it happen? I may never have those answers. But those answers are like the speed of the train: They are not within my control, and they don’t define who I am.
What I appreciate most is how these recent events have pushed me to reconsider how I spend my time on this ride. They are shaping who I become, one day at a time. Whether faced with adversity or good fortune, I’m grounded in the belief that I can always choose how to respond — and in doing so, give my life meaning.
Note: Amyloidosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Amyloidosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
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