How We Navigated My Late Husband’s Amyloidosis Diagnosis
Some thoughts on how to respond to a devastating rare disease diagnosis
I have previously written about the importance of staying positive despite our circumstances. Whether you are a patient or a caregiver to a loved one with a chronic illness, keeping yourself above the waterline to avoid drowning in your circumstances is essential.
As the legendary basketball player Michael Jordan once said, “Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it.”
I was a caregiver for nine years to my beloved husband, Aubrey, until he passed away last May after being diagnosed with hereditary ATTR amyloidosis in 2013. Those in the hATTR amyloidosis community know all too well about the ups and downs of being sufferers and carers. We know the nuances of a life spent mitigating the effects of a terminal condition while trying to remain focused on the journey rather than the end.
The path, however, is demanding. Contentment means finding purpose and staying on course despite the disappointments, disillusionment, and setbacks caused by the disease.
Climbing that wall
Everything began with an in-clinic appointment to discover the root cause of my late husband’s symptoms. He was losing weight too quickly. The diagnosis surprised us since an earlier blood test didn’t reveal anything untoward. So when we were informed that he had the hereditary form of ATTR amyloidosis, it was a tough pill to swallow.
Even though Aubrey had experienced seeing his grandmother and father pass away from the condition, the earlier test showing that he did not carry the genetic marker had given us the promise of everyday life as a family. That belief was shattered when a second test turned out positive.
The diagnosis became a colossal obstacle for us. As we tried to move on with life, the wall grew fiercely. The disease’s prognosis hindered us from moving forward with our plans, and our seemingly bright future instantly darkened. It took us a few years to accept our circumstances, but it was also a daily struggle. Aubrey had the added physical burden to carry as the disease robbed him of his normal functions.
At the same time, the children and I adjusted to becoming caregivers to a dying father and husband. The one thing that kept us all together was faith and hope — faith that as long as we held on to each other and kept hoping that help was on the way, things would turn out fine.
Even though we still lost him in the end, had we not figured out a way to climb, go through, or work around the issue, it would have been even more difficult. We would have also lost him to the illness more quickly if we had all given up.
Hence, despite what is felt and experienced, stay the course and do not give up. Enjoy every day and live in the present. We can accept the bad but never lose sight of the good — the joy, laughter, and happiness that is around us.
Note: FAP 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 FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
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