Waiting for lab results as a cold agglutinin disease patient

“You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the Lord forever, for the Lord God is an everlasting rock.” — Isaiah 26:3-4 (ESV)

“When you are up to your arse in alligators, it’s difficult to remember that your initial objective was to drain the swamp.”

I’m sitting here in my bedroom on a Wednesday morning waiting for my doctor to call. My emotions are in check, much like a musician waiting on stage for the conductor to walk on stage and give the downbeat. There’s a sense of anticipation, as if I’ve played this tune before. Yet there’s also a bit of concern, as if the composition has a bit of improvisation in it and I’m not quite sure what the result will be.

Both of the above proverbs are simultaneously running through my mind.

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Regular doctor visits to monitor my blood condition

Since I was diagnosed in 2018 with cold agglutinin disease, a rare blood condition in which red blood cells are targeted and destroyed by cold agglutinins, I’ve had regular checkups with my hematologist at the Spencer Cancer Center in Opelika, Alabama. The most recent one was last Monday.

Blood was drawn for analysis. The results are posted on the East Alabama Medical Center‘s patient portal 36 hours after they’re sent to the doctor. Therefore, I’ve seen them already, although I haven’t yet spoken with my doctor. I don’t have enough knowledge of the subject to form a reliable conclusion myself. Therefore, I wait.

The gardens at the Spencer Cancer Center in Opelika, Alabama, provide beauty for all. (Photo by Mary Lott)

My emotions are always the part of my life that’s hardest to control. I, like many others, leap to the worst-case scenario in my imaginings. But rarely has the worst case been my reality. Therefore, after reading the results of my bloodwork about 2 a.m., I’ve spent the morning in prayer. I truly believe that by focusing on the eternal truths I find in the Bible, I can gain an eternal perspective on my temporal experiences.

This point is where the second proverb comes into play. While I need to keep my mind focused on God and the larger perspective of life around me — draining the swamp — there are indeed some metaphorical “alligators” nipping at my “nether regions.”

For instance, why is my bilirubin count so high? I’ve quizzed the people back home who’ve seen me recently. They tell me that my eyes aren’t yellow. Nor does my skin have a yellowish cast. My fingernails and toenails all appear to be a healthy pinkish-red color. There’s no sign of jaundice. So what’s going on? Can this issue be dealt with at home?

My second “alligator” is a pesky blood value called immunoglobulin M (IgM). It’s mainly found in blood and lymph fluid and is the first antibody the body makes when it fights a new infection. My IgM values are sky-high. Those are my words, as I haven’t spoken with the doctor yet.

I don’t know too many specifics, but I’ve learned over time that when these values are high, my cold agglutinins are probably active and I may need an infusion of Rituxan (rituximab) or perhaps the combination therapy of Rituxan and bendamustine. I’ve had both of these treatments before, and they’re tedious and expensive. Yet in the overall scheme of life, they’re not bad. I’m thankful — very thankful — that these drugs have been developed.

Focusing on the future

My thoughts have now turned to the future. When I flew to the United States from my home in Papua, Indonesia, last week, I anticipated a quick visit and a return to work at the end of November. Those plans are now in turmoil. The “alligators” are moving in, and I must deal with them.

I’m refocusing on my relationship with God and will be spending time in prayer. I believe the verses from Isaiah that I included at the start of this column. Now it’s time to put those verses into practice.

The phone is ringing.

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.