Although I was diagnosed with cold agglutinin disease (CAD) only 2 years ago, I had symptoms for years before. We just couldn’t pinpoint it and my doctors and I certainly never thought it was from a rare disease.
Many times I wound up in emergent care or in the hospital for symptoms I thought for sure were a heart attack. Every time I was sent home fine. Flash forward I now know that a rapid heart rate, breathlessness, and other seeming heart attack symptoms are due to my CAD.
I was curious to know if other CAD patients have this as their first symptom. I asked in the forum I belong to and the response was literally all over the place. Some had my exact symptoms while others had reoccurring rashes, joint pain, dark urine, fatigue, and blue hands and feet—a total of 107 comments almost all with different issues.
No wonder it is nearly impossible to get an immediate diagnosis; there are just too many symptoms and they all can be attributed to something else. The heart issue is what I am most concerned about. I work for an organization where we are all about heart health and helping others learn and understand the importance of heart health.
Read about the diagnosis of CAD
Cardiovascular vascular disease is still the number one killer in women. This remains a concern for me as my family has a history of heart issues and strokes. My dad had a heart attack. Luckily he survived and my grandfather had several strokes before he passed. Since I am hyperaware of heart issues with my work and with our family history it is important that I stay on top of it. I have a cardiologist who is great and I am lucky enough to have a walk-in clinic specifically for cardiology where I live.
Here is the issue, as you learn to live with CAD you become used to the occasional rapid heart rate, breathlessness, and fatigue, depending on your level of anemia. You may write it off thinking I must have gotten cold and it will pass.
The problem with that is what if it is a heart attack or stroke? How would you know? Would you call 911 or go to the walk-in or hospital for the umpteenth time even though every time they have told you that you are fine? Chances are you will put it off waiting to see if they subside if you go and rest.
This is a real catch-22 for people with CAD. The obvious answer is to always err on the side of caution and even with me I know better and have done just that. Luckily it has only been CAD symptoms and it did subside. Unfortunately, people do this all the time, even those without CAD. They go to sleep but some don’t wake up as they had a cardiac event when they were sleeping.
CAD does affect your heart and some of those effects are due to the clumping of the blood which makes your heart pound, as it must work extra hard to push that blood throughout your body. Think about this, it takes 10 seconds for your blood to travel throughout your body and back again. Now add to the equation your thicken blood due to hemolysis, and you can see how much harder your heart is always working when you are experiencing hemolysis.
Further, consider the fact that CAD can also cause blood clots and strokes. It should show you how important it is to always double-check when you are experiencing what may seem like CAD symptoms.
It was important to raise this issue given the recent cardiac events in the news. If you happen to be a doctor reading this, please explain to your CAD patients that staying warm is important but also talk about the heart and how some symptoms may not be from CAD and advise them when to seek help.