Poor planning makes travel difficult with a chronic illness like CAD

It was the best of flights, it was the worst of flights.

Anytime a person flies around the world, their body is challenged. It was true 30 years ago when I first traveled to Papua, Indonesia, where I now live. It proved to be especially true on my most recent trip from Sentani, Papua, to my home in Auburn, Alabama. I was challenged physically and emotionally.

I have been feeling a bit stronger lately and wasn’t in a rush. Therefore, I didn’t request wheelchair service for the first two legs of my journey. That was a mistake. Wheelchair and other disability accommodations are required to be available in the United States. These requests are often honored by carriers from other countries, too. I qualify because I have cold agglutinin disease (CAD).

This website defines CAD as “a rare autoimmune disorder in which self-targeting antibodies attack and destroy red blood cells at low temperatures.” The destruction of those red blood cells results in anemia, which is why I typically need a wheelchair to navigate those long corridors. Airports are big!

Why I travel

I make this journey once a year to see my hematologist-oncologist at East Alabama Health’s Spencer Cancer Center, in Opelika. CAD presents with varied symptoms, the most prevalent being fatigue. There are simply not enough oxygen-carrying cells to fuel our bodies to perform when we wish.

Monday morning, when the first leg of my trip (Sentani to Jakarta) ended, everything seemed fine. I made it across the Jetway. But my 7-kg carry-on luggage surely began to gain weight as I lugged it down corridor after corridor searching for international transit check-ins. Eagerly, I went to the queue and stood in line.

It often seems that the more a ticket agent smiles at you, the worse the news is. After standing in line for 40 minutes, the very polite agent informed me, “You’re at the domestic counter.” She pointed to another counter about a mile away (not really; I exaggerate). “It’s just a short distance.”

I looked at her young, 20-something energy and thought, “It’s a very good thing I have a four-hour layover.” I asked about a wheelchair and was informed that one would be available at check-in. It wasn’t. Still, I wasn’t too upset. I had plenty of time to get from point A to point B.

Mistakes were made by me

The bad decisions I’d made were about to become very apparent. I staggered down to my departure gate, sweat dripping off my nose. The apocrine glands under my arms were making it quite unpleasant for those in my near vicinity. As the temperature within the airport rose, so did my sweat.

Then I learned my flight was delayed!

I had planned a 1.5-hour flight to Singapore, followed by a 3.5-hour layover before I’d climb aboard the third leg of my journey to the U.S. Singapore is a very nice, resort-style airport. I would’ve enjoyed some of that layover, but the delay out of Jakarta made this impossible.

My layover in Singapore was cut down to two scant hours. No wheelchair was available, and I had to speed through terminals one and two, finally arriving at terminal three. Then, I was told I had to run back to terminal two. Running is not something CAD patients do, as we don’t have the oxygen supply to sustain it. Indeed, it could be dangerous for us to do so.

There! The gate was in sight. But it would be closed to all in five minutes. Would I make it? It was all too obvious I would not. Salvation suddenly appeared: There were “Information” people. Would they call ahead and tell the crew that I’m disabled, my last flight was delayed, and I’m on my way? Yes, they would.

My heart was pounding when I boarded the flight. I wondered if I was showing signs of a heart attack, even though it was just CAD with its myriad symptoms. I apologized to my fellow travelers and assured them I would not be like this the entire 15-hour flight.

Lessons learned

I learned a few things on this recent trip home. First, I should always ask for a wheelchair. It’s easier to reject it than it is to acquire one during the trip. Second, always buy refundable tickets. I didn’t do this, so I felt pressured to make the trip from Singapore onward. Failure to do so could’ve cost me close to $1,000. Finally, schedule longer layovers to allow for my slow speed. I would have enjoyed Singapore’s Changi Airport more with a lot less drama.

I made the flight with one minute to spare before the airline’s check-in counter closed. My luggage did not.

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.