Diagnosing CAD is like finding a Komodo dragon in your backyard
When faced with rare events, skill and expertise are required
“You’ve reached 911. What’s your emergency?” My daughter Beth answered the call, ready to direct the correct emergency department to the scene. Nothing in that job is routine, but she didn’t expect the situation that unfolded.
“Please send animal control to my house. There is a Komodo dragon in my backyard.”
This was not going to be a routine call.
Nothing about my cold agglutinin disease (CAD) symptoms is routine, either. I have a high white blood cell count, and a low hemoglobin count and hematocrit, the percentage of red blood cells in the blood. I also seem to have a chronic urinary tract infection and, at various times, random and intense pain in my joints and muscles.
All of these are symptoms of other diseases. Some are signs of the general lessening of abilities that comes with growing older. A person skilled in diagnosis must take all the signs and symptoms into consideration in order to discover the underlying problem.
Rare is rare
The likelihood of a person actually finding a Komodo dragon in their backyard, even if they lived in Indonesia, the native habitat of these dangerous giant lizards, is extremely remote. The likelihood of someone having CAD is equally remote: There are only somewhere between 300 and 3,000 of us in the United States. It is the task of medical teams to sift through our signs and symptoms and reach a correct diagnosis.
When I first began showing symptoms of CAD around 20 years ago, I kept showing a high white blood cell count. The exact numbers weren’t available because the laboratory technician was looking for malaria parasites. The results were often described as: “You are negative for malaria, but you do have high white blood cells.” I felt lousy but couldn’t pinpoint why.
More symptoms followed. I’d lose my breath when trying to speak or sing. My chest would feel like an elephant was sitting on it. The simple act of breathing in and out fatigued me. These are classic CAD symptoms. On the other hand, they’re also classic symptoms of other more common conditions that first must be ruled out.
Confirmation is king
When the call came in, Beth began some inquiries into what was happening. “Let’s confirm. You’re saying the lizard is 6 to 8 feet in length and is gray with a bit of red on its neck?”
She immediately dispatched animal control to the location on her screen. Next, she attempted to rule out more common possibilities. It is very important for me to be clear when I communicate with my medical team. By describing my symptoms fully and accurately, they can ask more specific follow-up questions to pinpoint the precise difficulty I’m facing.
At some point during their interaction, the 911 caller mentioned sending her pet or her husband to corral the lizard until animal control arrived. Beth quickly indicated that this was the wrong approach. Beth knew that Komodo dragons have a toxic mouth environment. A bite could kill someone.
Sometimes, we “CADdies,” as those of us with CAD call ourselves, can follow a wrong course of action. For a time, I took extra doses of iron. This was wrong and potentially dangerous because CAD patients usually have sufficient iron.
Beth stayed with the call as services were dispatched. By that time, she had ascertained that it was not a Komodo dragon, but rather a smaller lizard, only 3 to 4 feet in length. It had the wrong coloring for a Komodo as well.
Prior to my diagnosis in 2018, the best care I received was to treat the symptoms. After waiting for nearly 15 years, I finally arrived at a specialist’s office and received the help I needed. Everything was dealt with. Things have been going well enough ever since.
The caller received the care that was needed by a team skilled in handling problems. I received the care I needed when I contacted a medical team who recognized my symptoms and were skilled in handling my concerns. I’m thankful for both 911 operators like Beth and my medical team at the Spencer Cancer Center in Opelika, Alabama.
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.
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