Yes, I’m traveling to the other side of the Earth for CAD treatment

Finding a doctor who's familiar with CAD isn't as easy as it might seem

by Mary Lott | September 4, 2023

Click! It’s time for a routine checkup. I wait a few minutes for the webpage to load, then add the parameters of my proposed travel. Anxiously, I scan the list of available flights and begin my research. I have certain criteria for the booking; paramount is the cost of the ticket, as the prices of flights have skyrocketed in the past year.

I live a world away from my doctor. We tell our friends that our home in Sentani, Papua, Indonesia, is not in the jungle, but the jungle comes up to our back fence. When I had my health crisis in 2018, I evacuated from here to go to my home in Auburn, Alabama, and met with doctors there. At that time, I was diagnosed with cold agglutinin disease (CAD) and have been receiving treatment as needed ever since.

A couple of questions I frequently hear from folks I know are “Why don’t you go to a local doctor?” and “Why travel so far? Surely doctors close by can look at your bloodwork.” I quietly sigh and prepare to explain once again the challenges that those of us with CAD face when choosing our medical care.

Atypical symptoms, odd lab findings delay CAD diagnosis

The rarity of cold agglutinin disease

Most doctors have never heard of CAD, which is understandable considering its rarity. Cold agglutinins are “erythrocyte antibodies which possess the property of agglutinating red blood cells at temperatures of below 37 C [98.6 F].” To put that in layman’s terms, I say that when I get cold, my red blood cells clump together and then dissolve.

CAD — a type of hemolytic anemia — is so rare that only 1 in a million patients are diagnosed with it each year. Because CAD is encountered so infrequently, it’s poorly understood.

Symptoms aren’t recognized

It’s challenging to diagnose CAD. In my case, other possible causes for my symptoms were considered first. In the mid-2000s, I was presenting with breathing problems, so doctors first ruled out lung cancer, asthma, tuberculosis, and even acid reflux.

Additionally, I had difficulty talking. I’d speak and my voice would suddenly stop midsentence. When that happened, I could only whisper my thoughts.

I became weak quickly and felt fatigue. My husband said I was like a flashlight with an old battery: It shines brightly when it’s turned on, but shortly after, the light dims until it’s a faint glimmer.

At times, I experienced abdomen discomfort. When I described my nausea to a doctor, I was told that perhaps I had chronic appendicitis. Thankfully, the doctor waited before sending me to surgery, but in the meantime, I couldn’t eat anything fibrous.

In addition to all these mysterious maladies, my bloodwork showed anomalies like high white blood cell counts and inconclusive red blood cell data. CAD blood must be handled according to specific guidelines, and the anomalies were because staff at the laboratories didn’t follow them; they didn’t know better.

At the time, no one considered CAD, and no one looked further into why my bloodwork was odd. After two and a half months of inconclusive tests in 2008, the doctor working with me finally said, “I can’t find anything wrong with you.” By that time, my symptoms had subsided and nothing further was investigated.

Getting new doctors means starting over

My concerned well-wishers have pointed out that while I live in a remote, tropical location, I could travel to nearby Jakarta, Singapore, or even Australia, where well-qualified doctors abound. Their skill and training are among the top in the world. I’ve considered that. I have no clue which ones treat CAD, though.

It took at least 15 years of searching to find a doctor who recognized my symptoms and referred me to my current hematologist at the East Alabama Medical Center. Considering that, I don’t relish the idea of starting over to find a physician closer to Papua, given the likelihood of repeating tests and the probability that a physician won’t know about CAD. It’s easier for me to travel to doctors familiar with my case.

I’m planning medical travel now. I had a respiratory infection in April that has hung around all this time. CAD has lowered my natural immunity, and I’ve needed four months to recover. I want to learn if I have any lingering effects.

Click! I’m starting my airfare shopping again.

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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About the Author

Mary Lott is a southern girl from Auburn, AL, living in Sentani, Papua, Indonesia, where she and her husband have worked for almost 30 years. She has taught sixth grade to missionary kids. Now, she designs websites, gardens, SCUBA dives as often as possible, and uses a motorcycle as her primary mode of transport. Their three kids have grown, but this gap is filled by two Papuan boys from one of the island’s interior villages. Mary is a surrogate “mom” while the boys attend a private school in town. Since her diagnosis at age 63, Mary juggles life and living at her home, “Ivy Manor East.”

Yes, I’m traveling to the other side of the Earth for CAD treatment