Cold agglutinin disease (CAD), a form of autoimmune hemolytic anemia, can wreak havoc on your organs. Although it’s a rare disease, it does affect hundreds of thousands of people across the globe, yet it is hard to find information about it. What you do find is incredibly hard to understand, at which point you end up stopping at every other word to look up the meaning. The other problem is that the information I come across is usually a dissection of the whole, meaning I have yet to find a beginning and end to explain how and why it CAD affects all that it does.
I was diagnosed after I had a gallbladder attack, which led me to a surgeon who planned to remove it. My preoperative blood work showed there was something wrong, and here I am 2 years later, with CAD. I have had high bilirubin levels ever since; mine usually land between 3 and 4 mg/dL.
Fortunately, I have not had any issues with my liver or gallbladder since that time. The only indicator has been high bilirubin, and sometimes I get a sting in my side if I eat fatty foods. Also, my spleen was slightly enlarged, and doctors felt it was best to leave it alone as it is known that splenectomy is ineffective with CAD. My hematologist does check my liver every 3 months when I have all my other workups done, and thus far, those tests have been in the normal range.
During an online discussion, I randomly disclosed that I have high bilirubin and one of the members posted that high bilirubin should be taken seriously and that I could have serious liver issues, so I should see my doctor right away. I explained my backstory and many other people replied how they also had high bilirubin—in some cases, a lot higher than mine for many years and they were fine. Yet there were others who had normal bilirubin. I was confused. Was my high bilirubin truly from CAD or was it from an underlying issue?
Read more about how CAD is diagnosed
All of this stayed in the back of my mind, and I felt it was best to mention it to my doctor. When I did, his initial response was, “Are they a doctor?” This was the response I expected, although I did feel better. He suggested that I have a sonogram to make sure my organs were doing well because it had been a couple of years since my last round of tests.
In those original tests, my liver was fine, but now it’s enlarged, which is known as hepatomegaly, and my gallbladder still has sludge and stones. Thank goodness my other organs are doing okay. I haven’t heard from my doctor yet to explain why this is, so I did a bit of research of my own and found that CAD can negatively impact the liver.
I discovered that the liver can become swollen from processing too many toxins such as supplements and medications like as excessive amounts of acetaminophen. This was interesting to me considering I only take Tylenol for pain, and the only supplement I take is folic acid.
Read more about CAD therapies
My gallbladder having sludge and stones for the past 2 years doesn’t help my liver either. The other interesting information I found was that I always thought that it was only the spleen that filters dead red blood cells, but it turns out the liver does too.
I can only surmise that my gallbladder, coupled with the constant hemolysis, has my liver working overtime. Now that I know that my gallbladder hasn’t changed in the past 2 years and is still diseased, perhaps it’s time to have it removed and give my liver a break. Will this lower my bilirubin? I’m not sure. I guess it’s time for more research.