I have been studying cold agglutinin disease (CAD) for the better part of 2 years. I do so because I was diagnosed with CAD, and it is important to be as informed as possible. I am gratified to say that CAD has been receiving a lot of attention and I see an increase in reports and studies that have been published in these short couple of years. One such study was the importance of protecting a CAD patient during procedures.
CAD patients will have many different procedures throughout their lifetime. Some are as simple as having your blood drawn or teeth cleaned, but others include elective surgeries and even emergency surgeries. Unfortunately, CAD is not a well-known disease, which means it is typically up to the patient to instruct the physician on the steps necessary to be safe.
This is often the topic of conversation among CAD patients. As a group, we confer with each other on what we need to do in these situations. Having this group to lean on is of the utmost importance as your doctor may not know the essentials of CAD or your specialist may not be available.
I have had my fair share of visits to labs for varied reasons and what I found is that not all labs are equipped to handle my blood properly nor are there a lot of phlebotomists familiar with CAD. My blood needs to be kept warm to avoid thickening rendering it useless. However, most labs need to send blood samples out, and therefore it is kept in the refrigerator. For this reason, I must make the phlebotomist aware of how the sample needs to be handled. Sometimes they cannot accommodate me, so it is important for me to know which labs can test onsite and those that cannot.
I have had an experience in the dentist’s office as well. I was prepared with an extra sweater as it was between spring and summer. At this point in the year, you can never be sure if the air conditioning will be on, so it is best to be prepared.
Read more about health care provider resources for CAD
What I was not prepared for was the cold water they use with the suction tube. It never dawned on me to discuss CAD with them as I know that Novocaine and other such medicines they use are at room temperature. As they began, I felt there would be no issues and felt confident about getting the procedure but then my mouth began to hurt, and my throat began to sting. It dawned on me that the water was causing me discomfort and I needed them to stop. They brought me a cup of warm water and I was able to finish by swishing with warm water as needed. It was quite the experience, and I am sure they will not forget it as well.
Operating rooms are usually freezing but they can provide warm blankets. And then there is anesthesia. I learned that a simple conversation with the anesthesiologist could also remedy that, as they can have the IVs kept at room temperature. However, what if the surgery you require is open-heart surgery or, even worse, it is an emergency, when you do not have the opportunity to discuss your needs.
The latter is the scariest situation I can find myself in. For CAD patients, perioperative management is vital to a safe and successful outcome. However, when you find yourself in an emergency this is not possible. In my diagnostic journey, I found that I have an anomalous coronary artery. Thankfully, it is benign. But if I find myself in a situation where I needed open heart surgery, what could they do to protect me?
A recent report discusses issues involved in cardiac surgeries that require hypothermic cardiopulmonary bypass and CAD patients. The process is used to cool the heart to lower the requirement for oxygen. It makes perfect sense but for someone like me, it could be catastrophic. Avoiding cooling my body to the point of activating CAD is necessary to avoid hemolysis and organ failure.
CAD has become a neverending learning process for me. I am hoping that more doctors and researchers will become familiar with rare diseases. In case any of us need medical attention, we can feel comfortable knowing we are in knowledgeable hands.