Getting diagnosed took patience, perseverance, and pertinacity

The years-long journey to a cold agglutinin disease diagnosis

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by Mary Lott |

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It was with great relief that I read the report. My quest for a diagnosis, which turned out to be cold agglutinin disease (CAD), was almost at an end.

In September 2016, I was determined to push through the confusion and find someone who could figure out what I had. I wandered around Singapore, and blundered through cultural errors, such as arriving at an appointment way too early, and another time, way too late.

The final doctor in Singapore, Dr. Zi, was not the first one I went to there. The first was an internal disease specialist. When he brushed aside an inconsistent blood report, I pushed him to look harder. In response, he referred me to Dr. Zi, a hematologist. Dr. Zi ordered a PET scan and a bone marrow biopsy and found an answer.

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In the early 2000s, there were often anomalies in my blood test results. When I was tested for malaria, for example, which is endemic here in Indonesia, the report revealed that I was negative for malaria but had a high white blood cell count. This usually reveals an infection, although in my case, I had no additional symptoms. So I waited until either I felt better or more symptoms revealed themselves. That time, I got better without additional symptoms appearing.

Periodically — usually when I had one of my recurring bladder infections — doctors would request a complete blood count. Invariably, the first report would say something about the laboratory damaging the red blood cells and therefore being unable to get a reading. Often, staff would give up at this point.

Sometimes more blood would be collected. After this happened — in many different laboratories in several places around the world, including Singapore — I knew that something weird was happening. Statistically, different laboratories in diverse places would not mishandle and damage the red blood cells. I suspected other samples were requested to confirm what they were seeing. That guess turned out to be incorrect.

Diagnoses that were only minor corrections

Throughout this period, from 2002 to 2016, I had a series of illnesses. Often it was a urinary tract infection (UTI). Frequently, I was told I had walking pneumonia. Once, I thought I was having a heart attack. On two occasions, doctors saw indicators of what turned out to be the correct diagnosis. Once, when I was being checked for a UTI, the doctor commented that he saw indications of a possible infection from the Epstein-Barr virus. However, he saw no other signs or symptoms and instructed me to follow up with my regular doctor if something more developed. It did not. We didn’t know it then, but this was a clue to the CAD diagnosis.

The second doctor looked at an MRI I had following a back injury. I was away from home when I sought treatment, but the doctor called me to tell me her findings. She begged me to follow up because she saw an unusual type of blood response near the site of the injury. She would not commit to what my doctor should look for, but I now believe she saw a clumping of my red blood cells. I heard what she said, but didn’t follow up because I didn’t have any specific symptoms. I was tired of wild goose chases.

Throughout the summer of 2016, I just felt bad, and I couldn’t pinpoint the exact problem. I had a high white blood cell count, as usual, along with general aches and pains and no energy. So I gathered up my courage. I did an internet search of internal medicine doctors in Singapore, the nearest city where I felt comfortable with the language and which had quality medical care.

I selected a doctor and contacted his office. I explained what was going on and that I needed him to explore and figure out what was happening. As usual, the blood tests he ordered were incomplete. Then I pressed him to question the laboratory as to what actually happened with my red blood cells. He referred me to Dr. Zi.

Finally, the right call

Dr. Zi diagnosed me as having a small B-cell lymphoproliferative disorder and, based on the PET scan and biopsy, ruled out lymphoma for the time being. I was told I was in a watch-and-wait period. It became a whine-and-worry period. Two years later, another health crisis led to a diagnosis of cold agglutinin disease with accompanying chronic lymphocytic lymphoma. Finally, I had a definite result.

In Singapore, my search was almost at an end. I had something to plan around, and I could finally work toward healing, as much as I could. Primarily, I learned that I need to be persistent. Sometimes it takes patience, perseverance, and pertinacity to push through to a diagnosis.

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.