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In certain blood disorders, it is vital to handle blood specimens properly. Any deviation can and often does skew the test results. These mishaps can send someone to the hospital to receive unnecessary transfusions and stress. I have one of those conditions, cold agglutinin disease (CAD).

There are steps necessary in obtaining correct blood results. These are steps that are out of my control, as they are done in the lab long after my blood is drawn. It is vital that the lab is aware of the implications of incorrectly handling blood when you have CAD. Unfortunately, because it is a rare blood disease, many phlebotomists have never heard of it. They take the blood and send it to the lab. However, this would be wrong.

Luckily for me when I was first diagnosed, I was sent a care package from Sanofi. It included special cards with instructions on how to handle CAD blood. I have had to use them many times as a respectful way to educate a phlebotomist and others when tests were required.

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What I have found over the past couple of years is there are few labs that can accommodate this procedure outside of a hospital. The blood needs to be kept warm until testing. Most labs send their specimens out which means they are kept in refrigeration until tested. This process will render my results useless.

When this process is not followed, the red blood cells stick together. This will skew hemoglobin level and hematocrit values and can even alter the values of the cold agglutinin titers, making the antibody count off as well. I am positive this is what happened all the years I had undiagnosed CAD. The lab would make a note saying “adjusted for cold agglutinins present.”

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There are many websites that state the blood drawn for CAD can be kept at room temperature prior to testing. This is a problem. What about air conditioning? I had this exact situation this past week. I went to my lab for my scheduled visit, and I noticed all the phlebotomists were new.

It has been 90-plus degrees all week. When I got into the lab it was freezing. It was so cold I put my sweatshirt on and asked why it was so cold. It was at that moment that I looked down at the vials as she drew them. I thought I should say something about leaving them out too long or at least mention what disease I have. I did not, instead, I assumed that they know what I have in the lab, and it will be fine.

Over the past couple of weeks, I have felt better than I have in a long time. In fact, I felt my hemolysis has been down as the typical dark urine after I wake up has been light and remained light all day long. My other symptoms subsided as well. My hemoglobin (HGB) was 9.9. I was completely shocked and stated such. I thought I would be no less than high tens, as I usually sit in the low to mid-10s.

The nurse was surprised by my response and when I explained how my symptoms have subsided, she did not know what I meant. She said, “Well you’re fine and you do not need a transfusion,” which I knew but that was not what concerned me. I was going to suggest that we redo it but instead, against my better judgment, I kept quiet.

A couple of things may have happened. First, my body is compensating and that is why my symptoms are not apparent with a lower HGB. Second, it was freezing in the lab and the fact that my blood sat there, out, not kept warm for at least 5 minutes before I even left the area.

I was upset, at myself. I know better. I should have said something instead of assuming. I had a gut feeling and did not follow it. It makes me wonder if they ever kept it warm because, in hindsight, I have never seen it put in warm water, a warm sleeve, or anything for that matter. There are times when the lab is extremely busy. Did the blood sit there with everyone else’s?

I explained the situation to my online group and learned this has happened to others. One person said she had the same situation and her HGB came back low, in the 6s range. She was on the verge of going to the hospital for a transfusion when they decided to retest her first. The subsequent result was high 9s. That is a huge discrepancy.

Since I have been going to the same lab, which is in my hematologist’s office, I assumed that everyone is aware of what I have. I cannot be sure what happened. One thing I do know is that I will make sure going forward that I show the phlebotomists, lab technicians, and doctors my information card, so it is understood how important it is to handle my blood correctly.

CAD patients and doctors rely on accurate blood results. Important treatment decisions are based on them.