Travel leaves CAD patient feeling like a broken piece of crockery

I had a china coffee pitcher that my husband gave to me one Mother’s Day. That alone made it special, but it was already unique. It had the requisite bowl for the coffee and a spout, but what I loved about it the most were its porcelain morning glories. In one of them, a hummingbird was gathering nectar. The handle was a brown vine that was twisted about in tendrils, with a stem of more morning glories.

My kids thought I was silly because I didn’t use it much — maybe a total of three times. I just enjoyed the uniqueness of the coffeepot. The kids didn’t understand that its usefulness lay in its beauty, not for the utilitarian purpose of pouring a drink. The coffeepot moved with me, even to Papua, Indonesia.

Alas, it didn’t survive its return trip to the United States. I just opened my luggage, and inside I’m crying. My coffeepot is in many pieces.

I’m similar to the coffeepot. I’ve returned to my home in the U.S. a bit fractured and battered. I have cold agglutinin disease (CAD), and, like the coffeepot, I wonder if I can be put back together.

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June 17, 2024 by Mary Lott

Poor planning makes travel difficult with a chronic illness like CAD

The challenge

CAD is a chronic, autoimmune, hemolytic anemia. All of that means that my red blood cells are destroyed when exposed to lowered temperatures. Destroyed red blood cells result in less oxygen carried throughout my body. That means I don’t have enough energy to walk, hike, or carry on daily activities without having to stop and rest.

Just as my coffeepot became shattered as it traveled back with me this trip, my heart shattered when one airline agent during my journey told me that to be eligible for wheelchair assistance, I’d need to be examined by a doctor from that airline. If I’d been told that at the start, I could’ve postponed my trip and gotten it done. As it was, complying would mean missing my flights.

I plastered a cooperative smile on my face and waited silently. The agent caved, and I was pushed approximately 4,000 feet through the airport to reach my gate, just in time to board. If I’d tried to make it on my own, I would’ve missed the flight since I must stop, rest, and catch my breath along the way.

More pieces of me shattered as I tried not to cough. This coughing is an attempt, I’ve been told, by my lungs to get more oxygen. It wears me out and leaves me feeling tired and achy.

Purpose of travel

There are two reasons I made this journey now. First, I wanted to check on my elderly father. In January I arranged for a caregiver to be with him during the days. I wanted to assure myself that the arrangement was still effective. I’ve now seen Dad, and he is well.

Second, I have a CAD checkup scheduled for the middle of this month. Since I’m still feeling the winter’s effects on my illness, I want to have a definite evaluation rather than my guesswork to ascertain the progress of my CAD. I have a dread feeling that I may need treatment. It isn’t a harsh treatment, just not my favorite activity.

I’ve been looking at the broken pieces of porcelain that once made up my coffeepot. It’ll be a project of several weeks to put it back together, and I’m not sure it’ll be worth the effort. On the other hand, if I need treatment, that will take several weeks as well. I am worth that effort.

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.