Interpreting lab results on my own always leads to needless worry

It's best to leave explanations about bloodwork to the doctors

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by Mary Lott |

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Turning my head away from the fiend with the needle, I closed my eyes and began mentally walking down a path through a forest. I had only “taken” a few “steps” when the nurse called me back to reality: “Are you OK?”

“No! I’m not OK. You’re stabbing me with a sharp weapon!” I thought but didn’t say it. I kept my head turned away and explained that I am a baby when it comes to blood draws.

“There. I’m in,” the nurse said. I remained facing the wall. I did not look in the direction of the needle sticking in my hand. It just plain hurt and I didn’t like it.

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What it’s like to travel around the world for CAD treatment

Routine CAD checkup

Blood draws are a regular part of my life now, a necessary evil. At regular intervals since being diagnosed with cold agglutinin disease (CAD), I visit my hematologist at the Spencer Cancer Center in Opelika, Alabama. Cold agglutinins are self-targeting antibodies that attack and destroy red blood cells at low temperatures. It is imperative for these to be monitored because allowing them to proliferate means a return of CAD symptoms — fatigue and pain, heart problems, anemia, and acrocyanosis — and the consequences of those symptoms. My most recent checkup was in early October.

I stepped on the scale after giving the nurse very strict instructions to keep this part of the exam to herself. Because CAD is an autoimmune disease, we “CADdies,” as those of us with CAD call ourselves, often find ourselves susceptible to whatever germ is making its rounds through our communities. I became sick with a cold-like virus last April and was sick off and on until the end of September. Because of that illness, I did not exercise or even leave the house. Therefore, I gained weight. I do not need to be reminded that I am obese. It is an ever-present reality. The nurse left me to await the discussion with my doctor.

I like this doctor. He listens to my concerns. He patiently answers my questions, even when I challenge him on questions I have raised in the past. During this visit, I requested permission to quote him. Graciously, he gave his consent. I inquired as to what he would like me to tell other CADdies.

His answer was plain: “It is just a nuisance.”

During other visits, he has told me that although I will always have CAD, it will not cause my death. That is good to hear.

Blood sticks don’t feel good

The most important part of my checkup is the blood analysis. Subjective markers are things I’ve observed and my health history from the previous year. All of these are subject to interpretation. Objective markers are the individual components of my blood analysis. Together, the subjective and objective markers are interpreted by my hematologist to determine a course of action.

Things did not go smoothly with this blood draw. It rarely goes smoothly. First, my nurse could not find a viable vein in either of my arms. Then, she hesitatingly asked, “Is it OK for me to draw it from your hand?”

“Owie-secowie! No, it is not OK!” Again, I kept my negative reaction to myself and gave permission. It took a long while for the blood to be drawn. Then, it quit flowing. Apologetically, she stabbed my other hand. Finally, she got what was needed.

The results were available online, 36 hours later. My hemoglobin was noted at 11.1 grams per deciliter, and my hematocrit (the percentage of red blood cells in blood) was 30.3% — both below normal values. When I read that, I became alarmed. When I read my high bilirubin count and IgM (immunoglobulins) value, I was certain my doctor would call me and advise another round of treatment with either Rituxan (rituximab) or Rituxan with bendamustine.

Finally, the news became official

I sat by the phone at 8 a.m. It was still silent at 8:30. I waited. Everything remained quiet at 9 a.m. Finally, at 9:20, the nurse called me. “Dr. Johnson says your bloodwork is fine. He wants to see you again next year.”

“Thank you, thank you!” I shrieked.

The lesson is that I should never interpret blood results on my own. It was with much relief that I called my husband on the other side of the world and gave him the good news.

My last infusion treatments were exactly two years ago. Right now, I am — still — good to go.

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.