Any time of the year can be difficult when you have cold agglutinin disease (CAD). It just depends on the weather, underlying issues, and if you were to catch something. If underlying conditions are known, then you can address them. However, I have primary CAD and my hemoglobin (HGB) is usually steady in the 10s.
The problem with it is since you look fine and often feel fine, especially with the warm weather you forget that something simple for you before can be detrimental now. Case in point, I got sick a couple of weeks ago. I cannot shake it; it takes so much longer for me now to get rid of something as simple as a cold or virus.
Outside of feeling ill when you are sick, it will often lower your HGB. The HGB is the one thing we CAD patients protect as best as we can. This is truly an internal issue that I have little control over, but you wear warm clothes, and multiple layers, crank up that heat earlier than you would have long ago, and of course, avoid people who are sick.
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Yes, you can avoid sick people, but sometimes you get sick no matter what you do. I had caught a virus with symptoms I have never experienced before. It is like a normal cold, but symptoms are mixed with tingling and numbness. At first, I thought it was the way my body responds due to my CAD. Then my sons caught it too and one of them had the same numbness in the same places with tingling all over. Without a doubt, the viruses going around are much worse and different than I have experienced in the past.
I originally felt off and wobbly it was very weird and concerning but I still attributed it to the virus. As time went on, I thought I was getting better but then I started experiencing CAD symptoms. I thought for sure it affected my HGB. I have a standing order at my hematologist’s office, so I called them for a lab appointment just to know for sure. Was it the virus or my HGB dropping?
To my surprise, it could not be done; their software was down nationwide. Now what? When you have CAD, you are limited to which labs can accommodate you. The nurse was wonderful and suggested another lab, but I knew immediately she did not understand the handling that was necessary for correct results. I explained that the blood must be kept warm for a complete blood count (CBC) and that my options are few.
My only recourse was the walk-in clinic that I know tests blood onsite and if necessary, I could bring my own warming pack or the hospital. I am not a huge fan of emergency rooms, especially not to have labs drawn. Unless I felt really sick, it would be a waste of my time and their time and resources.
Here I am a week from that call, and I am still experiencing CAD symptoms. My hematologist lab is still down, and I must suffer through it. Truth be told, it really would not make a difference, I just would like to know if my HGB dropped or if it’s still the virus. I did use my at-home HGB machine, and it says I am in the 9s. If I am to account for the 0.4 differential, I am still lower than normal.
This is why it is so important to be vigilant, wash your hands all the time, and do your best to avoid catching anything. These are the key things you must do but there are small things that are as important. Make sure to stay hydrated, keep all drinks warm, do not touch anything cold, and do not eat anything cold. It seems logical at this point but as you come off the warm months that allow for more liberties, you tend to forget until your body reminds you.
At this point there is little I can do unless my HGB were to drop to the 8s. If that were to occur, I would need to have a transfusion. The only thing I can do is sit tight and wait as I heal. Unfortunately, I am in unfamiliar territory here. When I was first diagnosed, I was in the 8s, and my HGB naturally went up on its own. When I had COVID, I had the monoclonal antibodies which temporarily stopped hemolysis and I recovered. This is the first time that I caught something that made me feel this ill.
I am hoping that relaxing and taking it easy for a couple of weeks, eating everything that aids in red cell production, and staying warm will produce the results I need.
My latest lesson is having a backup plan in case you cannot go to your regular lab. Make sure you know what walk-in or other labs can accommodate you. Also, rare disease or not, it is important to be extra diligent with your health. Try not to forget to always take precautions even when you are feeling well.