One of the hardest things about having cold agglutinin disease (CAD) is that it’s hard to find people who have what you have, especially when you are first diagnosed. After the shock of it subsided, I got hard at work looking through websites to try to find as much information as I could.
It was a very confusing time because I was still working through if I have primary or secondary CAD. I still didn’t understand what the labs meant, and which ones were the most important. I did find a blood test calculator online that allowed me to put in all the abbreviations and offered the proper ranges for each. It helped me understand what the lows and highs meant. I looked up what each abbreviated blood test was to see what they meant in terms of CAD.
I mention these things because it’s important that doctors discuss what these labs mean with patients. I understand that it takes time but it’s truly important so we can explain it to doctors that we see who do not know what CAD is. Chances are your doctor is a specialist, maybe a hematologist or rheumatologist. They are just a drop compared to all the doctors I have seen in the past 2 years, and they do not typically share information.
Read about HCP resources for CAD
Since it is not common for the information to be shared between most doctors, plus the fact that you’re dealing with a rare blood disorder, it is vital for you to understand lab results and anything else common to CAD.
Case in point, I have seen a gastroenterologist for my gallbladder. Gallbladder issues and subsequent removal are common in CAD. However, at my appointment I was scheduled with the nurse practitioner, she had never heard of my disease. She scheduled my colonoscopy, and I subsequently canceled it after I realized I didn’t have the option to speak with the doctor prior to the procedure.
I learned that sometimes water is used to clear an area if need be. Since I do not know if it is cold water, I thought it best to speak with the doctor, so I insisted that I have a doctor-led appointment first. I am having gallbladder issues again with sludge and stones, which we need to discuss anyway. I found out on my own that avoiding the cold isn’t just about the air temperature but about the temperature of what you eat and drink. This would include water and fluids used during procedures.
Unfortunately, doctors seem to be behind since COVID and this meant I had to wait another 3 months, but I will not put myself in a position, even one that is a common procedure such as this one, without discussing what I have and what I need to avoid prior. In other words, you cannot leave any room for interpretation.
Your doctor will warn you to bundle up outdoors to not get cold and they will advise you to avoid getting sick all to not lower your hemoglobin through hemolysis. However, there is a long list of what they don’t tell you. Maybe because they just do not know but others with CAD do. They either learned it the hard way, they learned it from someone who has CAD, or they found something online.
I learned a lot on my own, but I learned so much more through other people with CAD. Specifically, from a Facebook group called CADdy Chatter. I cannot stress enough how important it is that every CAD patient learns about this group.
I have mentioned them before and I visit them almost every day. I have asked so many questions and I have people that know what they are talking about answering. There are people that have had CAD for 20-plus years and have literally been through it all. Then there are all the new people, and believe me when I say each week it seems at least 5 more join. The nice part is you could be a loved one just trying to understand.
I felt it was important to discuss this because unfortunately, we are still at the point where too many doctors are unfamiliar with what we deal with. There are also too few doctors that have even heard of CAD. It is important that other people with CAD know there are many of us out there and we feel what you feel.