I have a rare form of autoimmune hemolytic anemia, cold agglutinin disease (CAD), a blood disease that without any symptoms you wouldn’t know you have it. I apparently have had this for years. All the symptoms I have had for a long time would come and go quickly enough that no one could pinpoint them. Since it is so rare it wouldn’t be something that doctors would even know to test for anyway.
CAD is bizarre. You can get it from having had an infection, another autoimmune disease, or many other diseases. The symptoms I have had vary from annoyance to pure exhaustion. Luckily, I have been fine, but it wasn’t the case when I was first diagnosed. It was terrifying; my body just decided that my red blood cells were the enemy and they needed to be eradicated.
I never really thought about my blood other than the obvious, that we need it to live. The thing is we never think about what’s going on in our bodies. We take for granted that our heart pumps blood and our lungs breathe in and exhale for us. These involuntary actions keep us alive and healthy, and we go about our lives. However, it’s not until something is truly wrong that we start to take notice. I have spent the better part of 2 years doing just that.
Read about diagnosing CAD
There are so many diseases that have outward signs. In some instances, you can tell just by looking at someone that appears sick in some way. CAD is not always like that. So far, my bone marrow has been able to sufficiently compensate, which has kept my hemoglobin (HGB) above 10.0. I know of a gentleman in his 90s whose HGB is 9; he works out 3 times a week and feels great with no treatment. And a lady in her 80s is like me in that her HGB is stable, in the 10s, and she just keeps moving along unfettered.
CAD affects people differently. There is not a single size that fits all. What may affect one may not bother another at all. My point is the 3 of us all have CAD, different ages, and differing HGB but we all have the same obvious symptom in common: we are jaundiced.
As much as I’d like to think I look normal, jaundice is that one small telltale sign. I can’t stand being jaundiced. It’s caused by the rapid destruction of red blood cells, which causes a lot more bilirubin in my body. My liver cannot keep up with it. Thus, causing the yellow or even in extreme cases orange color to the skin, eyes, and even nails. It looks terrible and there’s nothing I can do about it.
These past few months the weather has been more than perfect for me. I have enjoyed feeling normal again, even in air-conditioning. My CAD titer seems to be going down and my bilirubin dropped to 2.9, the lowest it’s been since that first gallbladder attack that kicked it all off. And subsequently, I noticed my eyes are getting a bit whiter—whiter than usual but still yellow.
I had posed the question to my Facebook group to see if anyone else had tried anything to get their eyes whiter. Of course, the first thing that comes to mind is Visine® but that gets the red out, not the yellow. There are other products, but their disclaimers list a ton of frightening side effects. We discussed it and no one has seen anything on the market that would work. Someone did have a great idea for yellow nails, they used teeth whitener, and it turned them white. I thought that was a great idea.
I know it seems silly to focus on being jaundiced considering all else that could be going on when you have CAD, but it really is uncomfortable when people look at you funny. Other patients expressed the same uncomfortable feeling.
I know people don’t mean to, but when they speak with you their eyes dart back and forth looking from eye to eye. I gather they are trying to figure out what’s wrong with me.
Except for my eyes, you would never guess that I have a rare blood disease, I look completely normal, just as rundown and overworked as everyone else. In all seriousness, eye drops that remove yellow would be a good option for CAD and other patients like me.