Unfortunately, at least in my experience, rare diseases elude diagnosis. I have had so many symptoms over the years that could easily be explained away. However, now after looking at all of them with a bird’s eye view you could see how they could have been narrowed down earlier. It was not until a preoperative blood test that my blood disease had been revealed. I have cold agglutinin disease (CAD).
When the doctor ran through my labs, he realized something was seriously wrong. He was a doctor of general surgery. I went to him after a stint at emergent care for left-side pain. When I was in emergent care, they concluded it was not my pancreas, which was the original thought, but instead my gallbladder. They were all in a rush to send me over for emergency surgery to have it removed immediately as it presented with sludge and stones.
While I was there the pain had subsided, and I felt it was best to see a surgeon. In hindsight that turned out to be a smart decision, as at the time I did not know I had CAD. This would have meant I would not have known that I needed to talk to doctors about how to take special precautions during surgery. Furthermore, they quite possibly would not have even been familiar with CAD-related factors. That could have led to some dangerous complications.
I was sent to a hematologist to follow up on my blood test results. I have not been back to that general surgeon nor followed up on my gallbladder since the pain had not returned.
Read about experimental therapies for CAD
Since my diagnosis, I have always had high bilirubin, between 3-4. It fluctuates each month and has only once been in the 2 range. During this entire time, I always associated it with my hemolysis.
Recently, I have been experiencing just a slight bit of discomfort in the area where my gallbladder and liver sit. My liver functions look good on my tests, which leaves me thinking that my gallbladder is acting up again. I am trying to be careful about what I eat since fatty foods can irritate it and I do not want to provoke an attack.
As I investigated it further, I found so many CAD patients have had their gallbladders removed and many found out they had CAD that way as well.
It is interesting that very little is reported about gallbladders and CAD. I found an article that discusses how certain blood disorders cause your liver to create too much bilirubin, which in turn can form gallstones. This would explain why so many CAD patients that I have spoken to, or those that have posted on our Facebook group, needed to have their gallbladders removed.
I know that CAD affects some of our organs. Yet we do not have enough information on how many organs it affects. What are these effects? How do you recognize them so you can explain them to your doctor? I feel like every time I turn around there is a new symptom about which I am learning how it relates to CAD.
The group I belong to is so knowledgeable, but they are not doctors and many of them have other conditions. It can become all too confusing because you are unsure if something is related to CAD or another condition.
It would be so helpful if someone would create a CAD-specific informational graph of the body. It would list all known organs that could be or are most often affected and why. This would be the most helpful bit of information that a doctor or researcher could compile and share with CAD patients. It would take the guesswork out of it. We would have an intelligent, informed way of communicating what and where we are experiencing issues. It would also eliminate the alarm we initially feel when symptoms arise between appointments.
I am not sure if it is time to have my gallbladder removed but I now know that it is quite common for a CAD patient to have issues and subsequent removal. It may be time for me to have it checked again.