column logo Alithea Athans

Growing up in New York, I have always enjoyed the change of seasons. There is so much to do, from the beaches in the summer, to leaf-peeping in the fall, to skiing in the winter and the beautiful flowers and growth in the spring. Unfortunately, cold agglutinin disease (CAD) has robbed me of all this enjoyment, as seasonal changes equal physical changes for me. It is life-altering, and modifying my behavior is what will get me through.

Your doctor will simply sum it up and say avoid the cold, and that means all forms of cold. However, as time goes by, I have learned by trial and error that there is so much more to CAD than avoiding the cold because each season brings its own set of rules.

The absolute hardest part is the bridge between seasons. By the time we get into a full-blown season, I have learned what I need to do to keep at the right level of warmth to avoid hemolysis—only to have the season change on me. My body compensates for the rest as my hemoglobin levels usually sit in the tens at that point. For instance, even though it is spring, winter will not let up here. In fact, it just snowed. Last week it was in the high 60s to 70s and then it dropped to the 40s. This leaves me all over the place. The warm covers are sometimes too much at night but then when I remove them, I freeze. It is a constant battle to find the right level of warmth and that includes what I am wearing. 

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What surprised me most last year, was that the air conditioning was just as detrimental to my health as the frigid air of the winter. I cannot seem to manage to go below 70 degrees in the house and this is particularly hard to regulate without central air. I have air conditioners in my windows and it’s an on/off situation all season long. I did learn that I could run the air conditioning in my bedroom to cool it off and then switch to a fan before bed, but only if it is facing away from me. It allows for air circulation without it blowing directly on me. 

Aside from air conditioning, you also need to deal with the outside temperatures. It gets extremely hot and humid here, which would seem ideal, but it is not. The hot sun brings its own set of challenges. As I warm up, I begin to sweat and the slight breeze, although warm, will make me cold without knowing it. You also must go everywhere wearing layers of clothing since you’re likely to encounter air conditioning wherever you go. 

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Also, I can no longer enjoy the ocean, or a lake for that matter, as the water is way too cold, even though it is quite refreshing, and that includes boating. Oddly enough I can have ice cream occasionally, which seems counterproductive, but for some reason, I can manage it in the warm months.

As we approach the fall, my favorite season, the temperatures are as erratic as the spring and it is back to wool socks, and double layers. I love to walk and take in the beautiful changes of the season, but that exertion coupled with cool weather is often more than I can bear. Recent falls were particularly hard for me to keep up with the weather changes, which of course requires my own modified behavior. It is identifying how much I can manage that is tough for me. 

I often feel it would be better for me to live in a place that does not have extreme seasonal changes. It is that extreme that often throws me into hemolysis and unfortunately, by the time I realize it, my hemoglobin will have dropped. Coming back from hemolyzing usually takes weeks. It is taxing on my organs, and it feels just awful. I know if I am careful, I will always have this low level of hemolysis, but I still wonder if moving somewhere without extremes would at least offer a better quality of life. A place where I can do more all year long without the detrimental effects of CAD.

If I could offer one piece of advice to doctors I would tell them they need to prepare patients beyond saying avoid the cold and let them know it is as important to discuss behavior modification and what that would mean. I cannot stress this enough.