column logo Alithea Athans

I have a trip planned in the next few months. A normal thing for most but what when do you do when you have a rare disease? Do you need to do anything at all? My rare disease is cold agglutinin disease (CAD), a form of autoimmune hemolytic anemia.

When the weather in the northeast is in the 50s to 60s, it’s not too bad for me. At night, when it gets down into the 30s, that is just too cold for me. I take all the usual precautions and bundle up if I need to go out, and I have had the heat on for a few weeks now. But what do you do when you must travel to an area you’re not familiar with and are unsure how it will affect you?

In my previous job, I traveled primarily by car to all my destinations, but I would also travel annually outside of the country for the annual sales conference. The flights were all typical in that I would experience pressure in my head that a piece of gum could easily remedy. My ears would pop and I would move on, but I am not the same anymore.

Continue Reading

Because of these changes — because of CAD — I am left with some trepidation when it comes to travel. Often, when I am experiencing hemolysis, my head will suddenly hurt so badly that I need to press on either side to add counterpressure. I also begin deep breathing and within seconds it disappears. My neurologist is sure that these experiences are thunderclap headaches. However, as all the other CAD patients that I have spoken to describe it as “swooshing,” I am not sure that we are experiencing the same thing. Which leaves me unsure of what it is.

Read more about CAD treatments

Either way, it makes me apprehensive about flying. The last thing I want to feel is that head pressure at 35,000 feet. Will it go away as easily as it does on the ground? The other issue is blood clots. I found a study that said that CAD doubles the risk for blood clots, and yet another states, “patients with hemolytic anemias manifest thrombotic complications.”

The question is, should I fly when I have a condition that increases my risk of clots? Simply flying can also elevate my risk for blood clots. It is suggested to wear compression socks if it is a concern. My feeling is that a trip to the doctor is the best way to settle concerns.

What about hemoglobin (Hgb)? Lower-than-normal Hgb is the biggest concern for most CAD patients. For me, having a Hgb of 8.5 g/dL or lower is a huge issue when flying. The pressure inside the cabin of a plane is lower than it is outside, which provides less oxygen, thereby making it harder for me to breathe. Since I am already experiencing exasperations at such a low Hgb, this could prove to be dangerous. The airline suggests that patients like me make sure I have oxygen on hand in the event that I should need it.

Read more about CAD complications

I would think that if my Hgb is 8.5 g/dL, I would be too sick to travel by air anyway. I know at one point when mine was 8.6 g/dL, I couldn’t lift my arms or legs, and my heart raced to the point I thought it would explode. It was awful. I cannot even imagine flying when I feel like that.

After doing my research for the best travel options as a patient with CAD, I decided to drive. I prefer to drive anyway. Since I can’t live my life by the New Hampshire state motto of “Live Free or Die,” I need to take precautions even in a car. If you have CAD, I am sure you know what I mean. I keep a “bugout” bag in my trunk, not because I am awaiting a national catastrophe, but because my kind of catastrophe would be if my car died while traveling in cold weather.

This bag contains a snowsuit, boots, wool socks, and hand warmers. In the event my car stopped running, I would need these supplies to keep warm while I await a tow. It sounds insane to those who do not have this disease, but trust me: If you do, you do not want to be caught off guard.