The challenges of giving directions as a CAD patient
Self-advocacy is crucial, but instructing others isn't always easy
“Easy, easy,” I said in my most reassuring voice. “It’s very easy to get to my house. There are only two turns.”
Despite that, the courier from the shipping company was telling me that I lived too far out in the jungle for him to possibly find my house and deliver my package. He was wrong. To get here from the shipping office, he needed to turn right out of the parking lot, go straight past the air force base, over the bridge, and then turn right on the second road past the bridge. That was the first turn.
He should have taken this road up the ridge exactly one kilometer. He would pass a church on the left. Shortly after that, there’s a dirt road. The courier needed to turn left onto that road and follow it the short distance to the end. Lots of delivery people were finding the house with no difficulty at all.
I sent him a map with the location clearly marked. He still got lost. I had to get my package myself from the office. I didn’t get lost on my way there. I followed a map!
My frustration has grown to the point that I won’t be ordering very often from the business that uses this delivery service. The products aren’t worth the effort to me. Given a choice, I will take my business elsewhere.
Technicians must follow directions
I sometimes experience a similar frustration when giving directions for how my blood must be drawn. In this area, I have to be very tactful, as I am not the trained specialist. Yet, for those of us with cold agglutinin disease (CAD), our blood requires special handling. Many times, because CAD is a rare disease, phlebotomists are unfamiliar with our needs.
CAD is an autoimmune, hemolytic anemia. Simply put, when my red blood cells get cold, they clump together and fall apart. Even the short distance from the place where our blood is drawn to the laboratory is enough for the red blood cells to begin breaking apart. Results are never accurate if the blood is stored in a cool place and processed at a later time.
This is why we “CADdies,” as those of us with CAD call ourselves, must be our own advocates. Just as I gave directions to the package courier, I beg the technicians to please follow four steps.
First, I request that the tube that receives the blood is warm. A cold tube does as much damage as direct exposure to cold air does.
Next, I look for devices such as baby heel warmers to wrap the tube in so it doesn’t cool during the walk to the lab. I also look for assurances that the blood will be carried to the lab immediately!
Finally, I ask how long the processing time is. I admit it is a passive-aggressive reminder that CADdie blood has to be treated immediately and carefully.
Online ordering again
A week after that earlier episode, I needed something else that isn’t available locally. But this time I was ready! The courier sent me a message to pick up my package. I wrote back that since I paid for door delivery, I expected door delivery.
Immediately I received a protest note. At that point, I handed my phone to my household assistant who spoke the national language much better than me. She pointed out that other businesses deliver to my house. She succeeded. Later that day, my purchase was delivered as expected.
The Cold Agglutinin Disease Foundation is similar to my household assistant in this example. The organization offers a printout for patients to take to the doctor’s office or laboratories when hemoglobin and other levels need to be checked. They speak the laboratory’s “national language,” the voice of experts. The cards on page 4 of the “Newly Diagnosed” document can be printed out to be distributed as needed. Hopefully, this will succeed and the results, like my second package, will be delivered as expected.
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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