Living with cold agglutinin disease involves cruel curveballs

“Oooh, poor me,” I groaned from the bathroom. I directed some mean thoughts toward one of my boys, who’d had a stomach ailment two days earlier. “I always get their germs.”

I began feeling ill on Nov. 12, and little did I know what the next three weeks would have in store for me. At one point, liquids were leaving my body from both exits, north and south. I kept telling myself, “This, too, shall pass.” The key to surviving it was consuming more liquids than my body was flushing out.

While my boy got up the day after his illness and went back to school, I was in for some fun. I made frequent trips to the bathroom, each time hoping it would be the last. After two days, a low-grade fever developed, and I took some medicine.

But this illness stuck around for a while, and I could tell by the burnt-orange color of my urine that I was hemolyzing. Other symptoms included lightheadedness to the point of needing to touch a wall for balance as I trod back and forth, and extreme weakness that prevented me from standing in one place. I could tell by looking at the pallor of my skin that my anemia had worsened.

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Why is this CAD-related?

Although this illness wasn’t caused by my cold agglutinin disease (CAD), CAD certainly contributed its “gifts.” In one of my more lucid moments, I was reminded why.

It all has to do with CAD being a rare autoimmune blood disorder in which cold temperatures trigger the body’s immune system to mistakenly attack red blood cells. But, according to Catherine M. Broome, MD, a professor of medicine at Georgetown University in Washington D.C., “CAD is not a cold-weather disease. Cold environments can, of course, exacerbate symptoms or make them worse, but it isn’t something that’s limited to only happening in a cold environment.”

Broome explained that, in people with CAD, the immune system produces antibodies called cold agglutinins. These antibodies bind to red blood cells, activating the complement system. The complement system typically targets foreign invaders such as viruses and bacteria for destruction by the immune system. While cold agglutinin antibodies are eventually released from the surface of red blood cells during circulation, complement proteins remain on the surface of the cells, flagging them for destruction.

A hemolytic crisis occurs when a large number of red blood cells are destroyed over a short period of time. As Broome explains, “These events can be triggered by very mundane things, like a common cold, other kinds of infections, surgeries, [or] exposure to a particularly cold environment.”

Does this information help me?

Knowing all of this does not mitigate my extreme response to what for most people would be a minor intestinal problem, but it does help me understand it better. It explains my low-grade, intermittent fever. It clarifies why I’m experiencing brain fog, muscle weakness, breathing problems, a cough, and an increased heart rate, even though I live in the tropics.

The fun and games didn’t end with the intestinal illness. Toward the end of the first week, I began experiencing an intermittent stabbing and burning sensation on the top of one foot. I didn’t see any redness or injury, so I tried to ignore it. But there was no ignoring this pain. It intensified throughout the day on Saturday and kept me awake and crying out that night.

Finally, in the early hours of Sunday morning, a stray thought entered my brain: This felt just like my shingles attack. Then, everything clicked. Shingles is a painful variant of the herpes virus that occurs in those of us who have had chickenpox. It lies dormant until an opportunity arises to ambush its innocent victim. With my immune system so weakened, shingles pounced.

My husband went to a local drugstore and spoke with the druggist. I was able to get an antiviral drug, and soon, all my symptoms began to retreat. Last week, I was able to get out of bed and walk around the house. Was I finally better?

When will this end?

Whoops! I spoke too soon. On Friday, something I ate didn’t agree with my digestive system. I reached for anti-diarrheal medicine again. Sunday involved more rounds of vomiting, and as of Monday, I still haven’t gotten out of bed.

Those of us with CAD know we need to be prepared for days and weeks like this. Plans can change with a bite of slightly off eggs or exposure to someone else’s mild cold. In what I classify as an understatement, Broome declared in her talk, “CAD is unpredictable.”

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.