This year, ongoing CAD symptoms dampened my holiday cheer
For me, 'home for the holidays' wasn't as magical or joyful as I'd hoped
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As the plane rolled along the seemingly endless taxiway to the gate, I began figuring out how I would get from the airport to my house, about an hour and a half’s drive. My ride had to cancel, so I was on my own. This particular problem was part and parcel of the entire trip.
I wasn’t upset, though. Things just happen and need to be figured out, so I slogged on. I heard the sounds of well-wishers at the baggage claim, families being reunited with a greeting of “Merry Christmas.” The airport decorations had festoons of greenery with brightly shining balls dangling from them.
It all passed me by, though, because I felt no Christmas magic or joy. For well over a month, I haven’t been happy, sad, or excited about anything. As my anemia apparently deepened, it sapped my personality along with it.
The prelude
This past fall, my health steadily worsened. I have a rare, autoimmune hemolytic anemia called cold agglutinin disease (CAD). That is a mouthful of words to say that under certain conditions, my body’s immune system attacks and destroys my red blood cells. This causes a multitude of symptoms. I’m always tired and cold, and I have a cough that ends in vomiting, and aches and pains in strange places that come and go. Lightheadedness rules out safe driving.
The interlude
My quest for health has taken me around the world from Papua, Indonesia, where I live, to Auburn, Alabama, where I’m from, just in time for both the Christmas holiday and to celebrate a milestone in my father’s life. Many family members from far and near arrived at various times, and a good time was planned as we wanted to get together for a variety of activities.
I had told Dad when I was arriving in Auburn, although I couldn’t swing by until Christmas Eve. I had hoped to go to the hospital to receive two or three units of blood. I didn’t know how low my hemoglobin levels, a measure of the oxygen-carrying protein in my red blood cells, were. I just felt bleaky.
The day finally arrived for blood work ahead of a checkup, so I said I wanted to receive a blood transfusion. I also asked for guidelines about going to the emergency room if things got worse. Sadly, I didn’t receive either of those. Normal hemoglobin levels for women are 12 to 15.5 g/dL, and mine was 8.4 g/dL. But that particular clinic doesn’t provide blood transfusions until a person’s hemoglobin level is 7 g/dL or less. I tried to negotiate, suggesting I might lower my level to meet their criteria, to no avail.
I couldn’t do much about the situation, so I spent most of my time sleeping and trying to recover from jet lag and fatigue. Christmas came and went, and I was unable to attend Christmas dinner. My family started arriving the next day and took up my slack.
The postlude
The Monday after Christmas was important because we were celebrating my father’s 100th birthday. He still lives independently and is able to manage his own affairs.
That morning was important for another reason, as I had a meeting with my doctor, where I asked about the ER again. Although I don’t have specific criteria about when to go to the ER, he reminded me that a special nighttime phone number exists, manned by someone who can offer help.
Most importantly, my doctor has established a treatment plan. On Jan. 5, I was tested for hepatitis, a requirement of the plan. On Wednesday and Thursday, I will receive the first infusions of Rituxan (rituximab) and Bendeka (bendamustine).
Throughout this experience, as my anemia worsened and my mental outlook declined, I clung to eternal realities. During this particular season of the year, when everyone is declaring “love” and “joy,” I felt neither. So I focused on a Bible verse that declares, “The Word became flesh and made his dwelling among us. We have seen his glory, the glory of the one and only Son, who came from the Father, full of grace and truth.” That is the reason for the season.
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.
Carole Sinda
Hoping that this treatment of R & B works well for you. Have you had this before? Good luck! Please let us know how you’re doing.