Misunderstandings are common when trying to explain CAD
Communication can be difficult, even if people speak the same language
The Norfolk pine was well over 6 feet tall. It was top-heavy and too big for the pot. I didn’t have the energy or strength to deal with it.
Thankfully, we’d hired a young man, Gari, to work as our gardener as he went to school. Gari’s mother tongue was Kemtuik, but he’d learned Bahasa Indonesia so he could move to the bigger town of Sentani, here in Papua, Indonesia, and gain a high school and college education. My mother tongue is English (via the American South), but I’d learned Bahasa Indonesia to move here as part of a Bible translation team. Gari and I had a common language.
Secure in that thought, I requested that Gari dig a hole and plant the tree there. I showed him the area, and he agreed to do it. Happily, I went off to my teaching responsibilities.
But just because we understood each other’s words didn’t mean we understood the intentions behind them.
Incomplete understandings of CAD
I experience similar challenges when explaining my cold agglutinin disease (CAD). Misconceptions can and do arise. Part of the problem is the poorly understood nature of the disease. It doesn’t help when CAD symptoms manifest in one situation, but not in another similar situation.
CAD is a type of autoimmune hemolytic anemia that’s triggered when our red blood cells (RBCs) are exposed to a cold environment. The cells clump together and then dissolve, called hemolysis, resulting in hemolytic anemia. People with CAD are often tired, weak, and prone to infections.
Most of the time, I don’t appear sick. Although I have a chronic condition, I often shop, attend games and concerts, and function as if I were healthy. I surprised a fellow airplane passenger when, after the flight, I climbed into a wheelchair to go to my next gate. The truth is, I’m not sick; I have a blood condition that makes me susceptible to becoming sick.
Before my diagnosis in 2018, the expatriate medical team would measure my blood oxygen, which was usually around 97% saturation. They couldn’t check my hemoglobin levels, though, because my RBCs would be broken down, making a reading impossible. So it was a surprise to learn my hemoglobin was 6.1 gm/dL when I entered a U.S. hospital in May of that year. (Normal levels for women range from 12.3-15.3 gm/dL.)
People sometimes think my oxygen levels drop when I breathe cold air. That’s not quite right. My RBCs do a valiant job, as in 2018, of carrying oxygen throughout my body. Having a blood oxygen level in the upper 90s is a good reading.
The problem is that in cold weather, my RBCs are broken down by cold agglutinin antibodies, and I just don’t have sufficient RBCs to do the job. My oxygen levels, as commonly measured, don’t drop. My RBC levels drop.
CAD patients need to be in control
Finally, I need to decide when to be active and when to take extra precautions. CAD varies from person to person. Some are fine in temperatures as low as the mid-40s F. I have to cover my mouth to warm my breath when I’m outside in the mid-60s. I’ve learned what signals danger for me and try to avoid it.
I came home that day in Sentani, rounded the house to the garage to put my motorcycle away, and burst out laughing. Gari had done exactly what I’d asked. He’d dug a hole and the tree was planted. It hadn’t occurred to me to tell him to take it out of the cement planter.
My CAD situation is frequently misunderstood in the way Gari misunderstood me. The words were the same. The basic idea was understood. My Norfolk pine was planted outside and thrived in the tropical environment, cement planter notwithstanding. However, as with CAD, things would’ve been better if we’d actually understood the precise meaning behind the words.
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.
About the Author
Comments