After months of fatigue, feeling better is what I want for Christmas

I'm heading to the US to argue for treatment, and maybe even a transfusion

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by Mary Lott |

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My husband, Mike, had obviously been thinking about my upcoming medical travel.

“Do you have a coat to wear when you get off the plane in Atlanta?” he asked.

At present, I have difficulty walking through my house. How was I going to make the long journey from the tropics of Indonesia to the winter climate of Auburn, Alabama? I do have six chemical hand warmers and a fuzzy throw blanket I was going to bring along. But not content with that, Mike went searching for a fleeced hoodie that he’d squirreled away in a dresser drawer.

I don’t really like to travel over the Christmas holidays. This trip means being separated from Mike on Christmas and for his birthday a few days later. But this year, travel is imperative.

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The problem we face

I have cold agglutinin disease (CAD), usually just a nuisance, but since September, it has become vicious! When I returned from the U.S. to our home in Papua, Indonesia, I thought I was on an upswing. Boy, was I wrong!

Ever since my return, severe fatigue has been my constant companion. I haven’t left the house in a month. Many days, I don’t even leave my bed. Working in tandem with my fatigue is chest tightness, which results in a dry cough that wracks my body until I vomit.

All of this was on my mind when I booked the flight to keep this medical appointment in the U.S.

What I hope to gain

I intend to ask about the threshold for receiving a blood transfusion. I feel so exhausted and look so pale in the mirror; I think I could really benefit from two or three liters of warmed red O+ blood.

I am also going to push for treatment. My body has done a remarkable job in keeping me on an even keel until now. I think I’m losing the hemolysis battle.

A dog rests under a blanket.

Mary Lott’s dog, Pokey, tests the efficacy of the fuzzy blanket she is bringing along with her to the U.S. to help keep warm. (Photo by Mary Lott)

When I see my hematologist, I have some markers that I need explained. I understand the importance of hemoglobin and hematocrit. They reveal how much oxygen-carrying capacity I have left.

But I am curious about my reticulocytes, which are immature red blood cells produced in the bone marrow. They help indicate how rapidly red blood cells are being destroyed. If there is a high number of reticulocytes, hemolysis is occurring rapidly.

I also look at immunoglobulin (IgM) levels. Normal levels are 40-250 mg/dL. As Catherine Broome, MD, a professor of medicine at Georgetown University in Washington, D.C. explains, a high level of IgM antibodies is part of the complement activation, and the antibodies bind to red blood cells, marking them for destruction. If there is a high IgM count, then there’s an increased likelihood of hemolysis and more severe anemia.

We’ll get together when I’m better

Mike will stay behind in the tropics, celebrating his birthday with the dog and whatever Christmas looks like without me. I’ll land in Atlanta wearing his oversized hoodie, clutching hand warmers like talismans, and carrying a throw blanket in my suitcase “just in case.”

I’m really hoping the doctor agrees to a transfusion and treatment. It will be nice to be warm from the inside for the first time all year. Feeling better would make a very nice Christmas present.


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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