Panic in the ER: Undiagnosed CAD symptoms caused consternation

At first it felt like a heart attack, which moved me to the front of the line

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by Mary Lott |

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The doors opened and I entered the emergency room. I quickly scanned the room and noted that it was about half-full. Inwardly, I groaned, expecting a bit of a wait.

Beckoning to me, the newcomer, was a hospital official at a small desk toward the back of the waiting area, near the entrance to a hall that led to the treatment rooms. I took a seat next to his desk and looked up.

“What brings you to the emergency room today?” He asked.

“I am having trouble breathing. It feels like there is an elephant sitting on my chest,” I whispered.

I was immediately ushered into a treatment and observation room.

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Dynamic diagnosis

I have learned that difficult breathing is a common symptom of cold agglutinin disease (CAD). CAD is a rare, autoimmune, hemolytic anemia. When red blood cells of a person with CAD are exposed to low temperatures, agglutinin antibodies target and destroy them. We “CADdies” have myriad symptoms, including tiredness, pain, and headaches. We also often have shortness of breath and heart problems.

That experience is now at the top of my list of “Ways to Be Seen Quickly in the ER.” I have often waited hours in an emergency room. But on that night in July 2008, I was ushered back immediately. It was the beginning of a two-month exploration of my symptoms and a process of eliminating almost everything. But the breathing difficulties and pain continued.

Not only did I have trouble breathing and an ache in my chest, I had also developed a cough. But oddest of all, my voice would stop working mid-sentence. I could usually whisper my thoughts, but talking was frequently impossible.

I kept checking my fingernails to see if they were becoming dusky-colored, which would indicate a lack of oxygen. But their color was normal.

The cough was dry, persistent, and unproductive. It would start when I exerted myself by walking too far or trying to play a slow set of badminton. I learned quickly to sit down, relax, and try to breathe slowly. Not doing so would escalate the cough to the point of nausea.

Not a heart attack

Back in 2008, the man performing triage suspected I was having a heart attack. I know this due to the speed of service and the fact that they hooked me up to an electrocardiogram machine. I didn’t mean to mislead anyone; I was merely describing the experience I was having with the best adjectives available. It did feel as if an elephant were sitting on my chest. There was also a corresponding pain in my back between my shoulder blades.

Two months of testing revealed absolutely nothing. With rest, relaxation, and summer heat, my breathing eased, my voice returned, and I could resume my activities. Every now and again, I’d have a similar experience, but I no longer went to the ER. Even so, it wasn’t until my CAD diagnosis a decade later, in 2018, that I had any answers. The symptoms were all manifestations of cold agglutinin disease.

Backyard with weed and banana trees

Work in Mary Lott’s backyard in Indonesia goes slowly because of the intense heat. (Photo by Mary Lott)

It’s happening again

Today, I’m lying on my bed doing my best to ignore the persistent pain in my back. My husband tried to talk with me a moment ago. It wasn’t a conversation, really. I can’t talk right now. Again. I have a cough.

All of this has come about because I overexerted myself in the heat yesterday and likely had minor heat exhaustion, which triggered my CAD. So, even in the tropical environment where I now live, cold agglutinin rears its ugly head.

I’d be panicking if I wasn’t positive it is CAD. All of my activities have come to a halt and I am resting. I don’t plan on cooking tonight so that hopefully this ache will go away. We CADdies often experience events that are worse than this. I can live with this one.

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.