Anniversary of mom’s amyloidosis diagnosis brings hope, gratitude
Stable test results were the best possible result
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I joined my mom’s cardiology appointment remotely last week. It marked the one-year anniversary of her diagnosis, and her doctor ordered a few tests to review her heart condition after nearly a year of treatment.
My mom was diagnosed with cardiac amyloidosis in June 2025. Before she could receive approval from the Taiwanese health care authority for the appropriate medication, she had to undergo one more blood test to rule out light-chain amyloidosis. She waited a few more weeks and then began taking Tafamidis the next month.
Before the appointment, Mom told me she was a little nervous. She had already had a blood test, an echocardiogram, and a PYP imaging test. The appointment would reveal the full picture, which was understandably nerve-racking.
I said to her, “What matters most is how you feel now compared with last year.” To be honest, a year ago I could not have imagined that she would be enjoying so much of her life as she does now.
A turbulent year
Starting that January, Mom went through a series of hospitalizations for various reasons. She had been on standard heart failure medications for three years, but her body did not respond well to them. It got to the point where she fainted and lost consciousness because of low blood pressure and a slow heart rate.
Thankfully, after she received a pacemaker, got her diagnosis, and started the appropriate medication, her condition began to stabilize in the second half of 2025.
She still has difficulty walking due to spinal stenosis and numbness in her legs. She sees many doctors regularly: a cardiologist, orthopedist, neurosurgeon, primary care physician, and Chinese medicine doctor. In addition, a visiting physical therapist comes to guide her through exercises.
Every morning, she walks outside with canes for 15 minutes. She repeats that process a couple more times later in the day or evening, as it is difficult for her to walk more than 15 minutes at a time.
None of this means her condition has reversed, but even so, it is enough for her to have a social life. She is friends with many of her longtime neighbors, most of whom watched me and my siblings grow up decades ago. Often when I call her in the evening, which is morning in Taiwan, she is at one of her neighbors’ houses having tea, singing karaoke, or chatting about life.
Knowing all this, the numbers on paper that we were about to review, while still important, carried less weight in my heart.
‘Hope is a good thing, maybe the best of things’
In the doctor’s office, the cardiologist shared that the test results were at similar levels as last year, which is truly the best we could have hoped for. The doctor also made sure to emphasize the progressive nature of the condition, grounding us in what the research and data have shown.
After the appointment, I sent Mom an encouraging message, thinking she might have taken the doctor’s words more heavily than I did and might see the future as a slippery slope. To my relief, she responded with calm and hopeful thoughts. That reminded me of the famous quotes from “The Shawshank Redemption.” When Red was in prison and longing to be released, he said “Hope is a dangerous thing” that can “drive a man insane.” At the end of the movie, Andy’s letter to Red says, “… hope is a good thing, maybe the best of things, and no good thing ever dies.”
I remember taking notes on those quotes after watching the movie. Decades into life, I now understand more deeply that hope is powerful. It helps us rise above pain and hardship, and it gives us strength.
To me, last year was a miracle in Mom’s case. It was certainly not easy, but I’m grateful that I can hear her talk about how she spends her days, shop for her when I see something she would like, and sometimes find that she is too busy socializing to talk when I call.
I’m hopeful for the future, not to defy all odds, but to appreciate what life has to offer.
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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