Unexpected health events are part of my life with Fabry disease

Since undergoing a heart transplant in September 2020, and after almost 23 years of enzyme replacement therapy to treat my Fabry disease, I have been enjoying relatively good health. My transplanted heart is in great shape. My kidney function has improved significantly. My lung function has returned to a normal range after functioning below 50% for years.

However, after many years of occasional, unexpected health events, I’ve learned to always expect the unexpected. A recent experience reinforced this mindset once again.

Last year, on the afternoon of Christmas Day, my wife, Angela, and I drove to the barn where Angela’s horse, Temple, is boarded. She wanted to spend some time with Temple to further develop their relationship. The two need time to bond and build mutual trust when they’re not practicing riding skills.

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We parked the car and began our walk to the pasture where Temple was enjoying her day in the sun, eating hay and grass and socializing with her pasture mates. About halfway there, I began to feel lightheaded and abruptly made a semi-controlled descent to the ground. First, I knelt on one knee, and then I lay down on the path, not knowing what was happening.

Angela asked me what was wrong, but I couldn’t respond right away. We were both apprehensive about the situation and began to panic. I’ve had several life-threatening experiences, and I thought, “Is this it?” This was another one of those tremendously scary moments.

After about five minutes, the strange feeling subsided. I was able to stand, and we walked slowly to our car. It took us about 30 minutes to drive to the emergency room at Duke University Medical Center in Durham, North Carolina.

Fortunately, a few months earlier, I had asked for and received an implanted cardiac loop recorder. I’d had some strange sensations around my heart and wanted to know if they were actually heart-related. When a person gets a heart transplant, all the nerves around the heart are severed, so it is difficult to know when something isn’t right.

Thanks to the loop recorder, the ER doctor was able to see that my heart had stopped for five seconds. Then, my heart rate was less than 30 beats per minute for about 20 seconds before returning to normal. If I didn’t have the loop recorder, I wouldn’t have known what happened.

A loop recorder report shows a five-second pause in Jerry Walter’s heart rhythm. (Courtesy of Jerry Walter)

The next day, before I left the hospital, doctors implanted a Micra leadless pacemaker in my heart. I was at ease, knowing I’d survived another unexpected event and the new pacemaker would keep my heart from stopping again.

The unexpected events continue

More recently, on May 31, I had an hourlong episode of severe, unexplained lip numbness. I had no other stroke-like symptoms, so I didn’t think it was a transient ischemic attack. My loop recorder was evaluated, and no heart events occurred during this time.

It’s not unusual for me to experience severe Raynaud’s phenomenon secondary to Fabry disease in my hands, but I’ve never experienced it in my lips. Raynaud’s is a possible cause, although I didn’t experience color changes in my lips like I do with my hands. This event remains a mystery.

Meanwhile, my life is good, and my health is relatively stable for a 70-year-old man with classic Fabry.

According to medical literature, everyone with Fabry disease should receive Fabry-specific treatment when recommended by their physician and undergo periodic assessments to maintain optimal health and avoid unexpected complications.

With three Fabry treatments approved in the U.S. and other adjunct therapies available, people with Fabry disease have an opportunity to live better and longer lives — even if a few unexpected events happen along the way.

Note: Fabry Disease News 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 Fabry Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Fabry disease.