How my CAD diagnosis seemed like a natural disaster to me

“It rained and it rained and it rained.” That’s the beginning of the ninth chapter of A.A. Milne’s “The House at Pooh Corner.” Piglet tells himself that he’d never seen so much rain in his life.

I felt a lot like Piglet when I went home in Sentani, Papua, Indonesia, one March evening in 2007. The skies opened up and torrents came down. By daybreak, many homes, crops, animals, and all the bridges had washed away.

The landscape was forever changed. Huge boulders crashed down the mountainside. Scars of landslides still remain on Mount Cyclops. These physical changes are easy to see.

When cataclysmic events happen to people, the scars are harder to visualize.

Often these torrents that people experience are in the form of a wedding, a birth, or, in the fullness of times, a death. One such watershed event for me was being diagnosed with cold agglutinin disease (CAD) in 2018. It was both affirming and life-changing. I was affirmed because my many and varied symptoms finally had a name. A treatment was available. Successful treatment changed my life in many positive ways.

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Life-changing floods

The flood of March 2007 started on a Wednesday evening during choir practice. At the end, when I stepped out the music room door, I groaned. I hated riding my motorcycle in the night, especially through what was becoming a torrential downpour.

But this time, Rattletrap, as my kids affectionately named my motorcycle, didn’t start. It’s always had a problem with the starter, and, of course, it wouldn’t start that night. I called my husband, Mike, to come pick me up on his motorcycle.

To get home from choir practice, we had to travel down one ridge of Mount Cyclops, over one of the town’s five bridges, and then up another ridge. By the time we reached the bridge, the river had already overflowed its banks. I made Mike turn around and go over it again, slowly, so we could see the river.

With amazing foresight, we made the immediate decision to fill up Mike’s bike with gas and purchase an extra two liters for my motorcycle to use when we retrieved it the next day. At the time, we had no idea that Sentani would be cut off from the rest of the world by morning. All the bridges were demolished by the floods. There would be no deliveries of gas, nor food, for the next few days.

In 2018, I was almost demolished by CAD. My hemoglobin was valued just over 6 grams per deciliter (gm/dl), whereas normal levels for women are between 12.3 and 15.3 gm/dl. All my energy had been washed away because of the blood agglutination I was experiencing. Something had to be done quickly. Instead of purchasing gasoline as we did for our motorcycles that night in Sentani, I went to a hospital. I received an immediate infusion of whole blood and subsequently, treatment with Rituxan (rituximab).

In Sentani today, sturdy, broad bridges stand where the former bridges were. The channels in the rivers have been reinforced, widened, and deepened. People are more conscious of areas for landslides and for flooding, and they’re considered when building or improving housing.

The aftermath

Our immediate challenge the morning after the flood was to assess the damage. Then we looked to help others. We made sure we had basics of living: water, food, and undamaged shelter. We figured out routes to get to work. We wanted to return to “normal life” again.

I’m much healthier today than I was before 2018. Although I take my energy limitations into consideration when traveling, I’m now able to resume travel. I’m more active than I was. I can move forward with my life’s plans.

A few years ago, the phrase “constant change” was used frequently here among the expatriate community. The idea was that situations often change, and knowing that, we can prepare for them. I quote to myself Psalms 46:1-3:

“God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling.” (English Standard Version)

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.