Treading water: I’m figuring out how to discuss my CAD symptoms

I dipped my foot in the water before plunging in. Oh! It was cooler than I’d wanted. I jumped in anyway, hoping I’d warm up as I swam.

I’m a good swimmer, and I’ve always loved to do it. Although I’ve never been particularly speedy, I can swim for hours. My introverted self enjoys the time alone, and no conversations or interruptions challenge my thought processes.

As I swam, I reviewed the topics I’ll be discussing with my doctor next week. First was my response when he walks in and asks, “How are you?”

That’s a difficult question for me to answer. I think I’ve been experiencing various things, so I try to prioritize them in my response. A recent meme posted by another columnist here at Bionews, the parent company for this website, quipped, “Communicating with doctors who treat me as an unreliable witness to my own condition is a second language.” I try to phrase my answer to my doctor’s first question within that so-called second language.

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I have cold agglutinin disease (CAD), a rare, autoimmune, hemolytic anemia in which my red blood cells clump together and are destroyed. The result is constant fatigue. Other symptoms include various aches and pains, Raynaud’s phenomenon (when blood vessels constrict in the cold), acrocyanosis (when fingers and toes can become bluish), and even heart problems.

And while CAD doesn’t directly affect jet lag, the lack of oxygen circulating in my bloodstream can prolong recovery from changing time zones. That’s what I’m experiencing now.

With that in mind, as well as recognizing that I need to be more active than I’ve been in recent years, I decided to add swimming to my daily habits.

I haven’t been doing any type of exercise and expected some muscle complaints after swimming. Roy Smith, a hematologist at the University of Pittsburgh Medical Center, has noted that the muscles of CAD patients need to be retrained to incorporate more oxygen. I thought I’d give that a try. I planned to recover for two days after swimming laps, then do it again.

It’s been five days since my “polar plunge.” I didn’t warm up as I swam. While I’m not certain the reaction my body had was because of the cool water, I can’t rule it out.

I left the pool and went about my errands. By that afternoon, I began experiencing stomach cramps. I finished early and went home to bed. Couple that with the fact that I’d crossed 14 time zones only five days earlier, making my circadian rhythms completely topsy-turvy.

I did manage to get seven hours of sleep that night. I awoke for two or three hours and then went right back to sleep. It was the first good sleep I’ve had since landing back home. It didn’t last, though, and the next day was awful.

Something apparently had happened. I could barely get out of bed and stagger to the bathroom. I went immediately back to bed after that. An overwhelming fatigue had taken hold of me, and at some point, I thought my hemoglobin must’ve plunged, because I felt similar to my pre-diagnosis days.

I was too fatigued to figure it out. I remained in bed all that day and most of the next, and I’ve been struggling ever since. I’ll be awake for several hours at night and then make up for the sleep deprivation during the day.

Talking to the doc

When my doctor asks, “How are you?” I sense that he’s looking for a short answer. But I don’t think I can encapsulate my recent months in a short answer. An incident in early February affected me for two months, for example. Was my recent experience from hemolysis or jet lag, or both?

I’ve added a question to my list to discuss. I’d like to have some criteria for determining when my symptoms need him to follow up. I’m always trying to evaluate myself, and I suspect that I needlessly inflate symptoms that are normal for me. I wonder if he’ll take me seriously.

My plan for the remainder of this week is to figure out how to sleep during darkness and stay awake during daylight. In other words, I’ll be recovering from traveling. Additionally, I have one week to figure out how to phrase things in a language my doctor will understand.

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.