4 magical words that transformed an ordinary Monday into a good day
It was the boost I needed, given my disappointing hemoglobin results
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Monday, Aug. 17, was a good day. I don’t usually classify my days as good or bad. They’re just days; something happens or doesn’t happen, and then I go to sleep, and I open my eyes to another day.
But something happened on that Monday that had me smiling all week. Four powerful words, probably not considered impactful by the speaker, made all the difference.
I had nothing scheduled for the morning. On Tuesdays, Wednesdays, and Thursdays, I have online meetings with an elementary student I’m helping, but since it was Monday, I could give in to my fatigue.
Blood work again
I dreaded the afternoon, when I had blood work scheduled at the center where my cold agglutinin disease (CAD) is monitored and treated. Since the beginning of the year, according to hospital records, I’ve had 29 successful blood draws to monitor my hemoglobin. I say successful because my veins are notorious for being difficult. The record number of needle pricks prior to actually striking blood is eight. On that particular visit, everyone concerned was weeping before my blood began filling the vials.
This time, I greeted the phlebotomists as I walked in and asked how their summers had been. The call went down to the laboratory, and the technician came up with pre-warmed vials. She was prepared, and my specialist and I were ready.
I couldn’t watch. I never can. Even after all this time, the idea of a sharp, pointed implement impaling my flesh is not a vision I want in my brain. I held still and prayed my vein would also.
It did! One stick with no probing! That doesn’t happen often. The tension in the room diminished, and there were smiles all around. In two minutes, the experience was over, and I was saying goodbye again. I probably won’t see these specialists for at least two months.
Other technicians stuck their heads out of their office doors as I left. The head of the department waved and spoke the four words that transformed the rest of the week — and made it sublime.
Results unclear
These visits are super important to those of us with CAD. The blood tells the tale of the retreat or advance of the disease. I could barely hold my impatience as I waited until Wednesday morning, when my levels would be posted.
As I looked over my hemoglobin numbers, I frowned. In June, the value was 11.3 grams per deciliter (g/dL) — the normal range is 12 to 15.5 g/dL — but now it had fallen to 10 g/dL. I hadn’t had any signs of hemolysis, the destruction of red blood cells.
I had been more tired than I was in July and early August. But I attributed that to being a little depressed about my husband returning to his work overseas while I remained in the U.S. I also think it could be “out-of-proportion” fatigue caused by chronic inflammation and the complement cascade as described by Jeremy Lorber, MD, a hematology and oncology specialist at the Cedars-Sinai Cancer Center in California.
The other blood values appeared neither good nor bad. This is why the next phase of monitoring my CAD — my face-to-face consultation with my doctor — is important. I don’t have enough knowledge to interpret everything correctly.
Additionally, other symptoms of CAD cannot be quantified. There is no objective test for brain fog. What are the normal blood values for depression? Hopefully, my medical team can provide some direction in dealing with these. Perhaps they can let me know if my life will move closer to normal.
I finished the week with some neutral emotions due to the ambiguous blood results. Nevertheless, the memory of Monday’s visit still had me glowing inside. There was nothing remarkable about the rest of that day. I had nothing on my schedule, and it was too hot to be outside. The rest of the week followed in the same pattern as most days: I wake up, something happens or doesn’t happen, and then I go to sleep, and I open my eyes to another day.
But four words transformed a routine week into something golden: “You’re my favorite patient.”
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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