3 Ways I Strive to Live Intentionally Amid Amyloidosis Challenges

As I write this, my husband, Aubrey, is undergoing surgery to remedy his congested nasal passages, which have reduced the oxygen flow into his lungs. It will take about 70 minutes.

Turbinate reduction surgery is safe and straightforward for most people. Usually, the patient is monitored for a few hours then discharged once the surgery is complete.

However, hATTR amyloidosis patients are at an increased risk for complications, because both surgery and anesthesia can cause various issues given the disease’s multisystem involvement. Aubrey’s amyloidosis has resulted in cardiomyopathy and polyneuropathy, and the marriage of these two conditions can be a concern.

As caregivers, our loved one’s health complexities are never an easy ride. We know that they come with the territory of an incurable illness. We do not walk in our loved one’s shoes, but we are still right there beside them, through the good and the bad.

I have learned to channel intentionality in moments when I don’t know what will happen. Intentionality has steered me away from the pitfalls of anxiety and apprehension. When I actively live my life in line with my values and adopt a good understanding of my belief system, I become intentional.

Caring for my husband has led me down a path I never expected to take. Today also happens to be our wedding anniversary. Looking back, I am sure we would be leading a fuller and more adventurous life if not for the disease. We would be doing more activities and traveling. Since his diagnosis in 2013, we have had to curtail a lot of things, and we have crafted our relationship to accept the design of the disease.

Nevertheless, I have also become less reckless and more mindful about living life. It has not been easy, but I have learned several lessons about intentionality that may help others on similar journeys.

Express gratitude every day

When I express gratitude to those around me, I instinctively become happier. Expression requires action, but the result is priceless. Do it for others, but more importantly, do it for yourself. Today, I am grateful to the doctors and nurses caring for Aubrey, and I am grateful to you for reading this. Thank you.

Pause, breathe, look up, smile

Before taking action, there is always a window of opportunity. In this moment, I pause, take a deep breath, look up at the beauty in front of me, and find a reason to smile. This gap allows me to still my thoughts, and more often than not, it has prevented me from making impulsive decisions. In a stressful life affected by a debilitating condition, aligning with sound judgment rather than my emotions is so important.

The hospital grounds with Rangitoto Island, New Zealand, in the distance. No matter what is in the foreground, if we look farther ahead, there may be beauty waiting to be recognized. (Photo by Jaime Christmas)

Find your ‘score’ moment

Whether you are a patient or caregiver, accomplishing a daily to-do list is almost impossible. Let us be honest and accept that there are days when it’s difficult to even get out of bed. I set a high standard of what I want to accomplish by the end of the day, but I am fine if I only do two of 10 things. For Aubrey, ticking off one is an occasion to rejoice. These are all “score” moments.

So, as I’ve sat here typing in the hospital waiting area, I’ve taken many moments to reflect, smile at the people walking past me, admire the beauty of my surroundings, and be thankful. I am grateful that Aubrey will be able to breathe so much better by the end of today, and that I have been married to a good man for 26 years.

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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.