Turbulent trails and triumphs along a CAD patient’s journey

I was the first passenger to board the plane. The flight would be short, only two hours long, from Atlanta to Houston. I felt comfortable with the route. It was over the Southeastern United States, my favorite part of the world.

I anticipated some bumps along the way, however; the summer had been punctuated by pop-up thunderstorms in the heating of many days. There was no reason that this day, and therefore this flight, would be any different. Turbulence doesn’t bother me. It happens every flight I’m on, and I’m confident planes are built to withstand it.

After about 30 minutes, I flicked on the screen in front of my seat and monitored the flight route. Watching the map helps me be patient with the tedium of sitting in one spot for a long time. But we were not where I expected us to be.

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I’d thought we’d travel from Atlanta over Alabama, crossing between Montgomery and Birmingham. Then, we’d continue straight over Mississippi, entering Louisiana from Mississippi’s southwest corner.

Instead, we’d turned almost due south as soon as we crossed the Alabama border from Georgia before turning just north of Interstate 85. This course took us just barely north of New Orleans before heading west, skirting the coast, and eventually turning north into Houston. This shift was not calamitous; it simply wasn’t what I’d expected.

The track of my recent flight took a more curved, southerly route than the straight line that I’d anticipated. But I arrived properly in the end. (Screenshot by Mary Lott)

Deviations in flight and life

Much like the unexpected turn in our flight path, my life took an unforeseen detour when I was diagnosed with cold agglutinin disease (CAD) in 2018. Before then, I’d envisioned my husband and I working four-year stints overseas, punctuated by one-year breaks in our home country, the U.S., to report to the entities that sent us abroad.

CAD is an autoimmune, hemolytic anemia that leaves those who have developed it experiencing fatigue, brain fog, joint pains, heart problems, and breathing difficulties. It occurs when my red blood cells are exposed to cold weather; that’s when they clump together (agglutinate) and are destroyed. I’ve been fortunate because my body has responded well to therapy with Rituxan (rituximab). Nonetheless, my life began deviating from my planned route.

My husband and I had planned to spend summer 2018 to summer 2019 in the U.S., basing our reporting from our home in Auburn, Alabama. It wasn’t a hardship to receive treatment and follow-up care that year. Initially, I met with the medical team every three months, then every six months. I was able to return to our home in Sentani, Papua, Indonesia, in the fall of 2019. My husband went there first that August, but my life-route change delayed my return until the end of September.

The next checkup was scheduled for May 2020. Everybody’s life took a deviation beginning in March of that year, what with COVID-19, and my husband and I, changing our life’s trajectory, were required to relocate to the U.S. That checkup went well enough, with the next routinely scheduled for six months later. Sadly, this timing exposed me to cooler temperatures, and I needed another round of rituximab infusions that fall.

We were able to return to our tropical home in January 2022. I call it “getting out of Dodge before the shooting starts.” By that I mean before cold weather sets in, when I must stop going outdoors.

I was able to get my checkups stretched out to summers until this year. My life’s route turned from my expectations when I was exposed to my particular turbulence — cold weather — this past February. I did experience hemolysis from that, resulting in more diagnostic tests, and now have a shortened checkup timeline.

Course corrections

I find that my life, like my recent plane travels, is experiencing course corrections. While the exact details, such as my CAD diagnosis or the bad weather the planes encounter, cause me to deviate from the planned routings, they’re not unexpected. These are normal changes at my age; health disorders develop, just as pop-up thunderstorms do in the Southeast in the summer. As the poet Henry Wadsworth Longfellow stated in “The Rainy Day,” “Thy fate is the common fate of all / Into each life some rain must fall.”

My flight arrived on schedule and unharmed in Houston. My life adjustments are following a similar path.

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