Years ago, while working in the healthcare industry, I received one of the most important pieces of advice I’d ever get: “Always be your own health advocate.” I often see people that would accept their diagnosis, move on, take their medication, and wait for the results. As for me, I like to be in control.
Upon discovering that I had cold agglutinin disease (CAD), my first instinct was to cure it. I have, of course, since learned that I can’t just “fix” it, as there is no cure. However, I can certainly arm myself with as much information as possible and do my part.
Since I can’t take a magic pill to get rid of my symptoms, I have instead decided to find ways to help my body cope with the never-ending and exasperating hemolysis and exhaustion. CAD is not a deadly disease, but its stress on your organs can be. One of the main symptoms I experience regularly is simply being cold; staying warm is my top priority. I often have heart palpitations and breathlessness. It has become a necessity to find ways to maintain a healthy lifestyle and think beyond being warm. These small but important additions to my daily routine are going to be the difference between allowing this to happen to me and me taking the reins.
The heart palpitations I experience are sporadic. They come and go with or without exertion, with the breathlessness obviously due to a lack of oxygen. I have been lazy for the past year and a half. More than anything I have been afraid of pushing my heart too far, but this lack of movement may cause me more harm than good.
I recently again took up tai chi, something I had done and loved years ago. According to the Mayo Clinic, “Tai chi is an ancient Chinese tradition that, today, is practiced as a graceful form of exercise. It involves a series of movements performed in a slow, focused manner and accompanied by deep breathing.” It can be found easily on YouTube and even streamed directly on your TV. I mention this specifically because many of the patients I have spoken with who also have CAD are much older than me.
Read more about experimental treatments for CAD
The age for developing CAD is between 40 and 80 years old. This is a great exercise that will help them and myself with balance, moving your muscles, and enhancing breathing. I prefer this because I can do it from the comfort of my warm home. My muscles have gotten quite tight since I have adopted a sedentary lifestyle. I know that slow meaningful movements of tai chi will help with flexibility and my heart. Deep breathing is especially important as it relaxes you; you draw in needed oxygen (which my red blood cells lack) and reduce stress and anxiety.
According to the American Heart Association, heart disease is the number one killer in the United States. It is particularly important for me to take this seriously as CAD is very taxing on the heart. Unfortunately, CAD forces your red blood cells to clump together, creating a thickness in the blood, making it harder for it to go through the vessels resulting in your heart pumping harder. CAD can create problems like arrhythmia, heart failure, and heart attack, to name a few. These important reasons are why moving more and eating healthier are important to me.
Exercise, even low impact exercise like the one we discussed can be hard for a CAD patient because we tend to get exhausted when our HGB is low. The best way to describe it is known as the Spoon Theory Metaphor. This theory is helpful for those that deal with chronic pain but also for those of us that experience exhaustion from autoimmune diseases. The idea is that we get a certain amount of spoons a day, let’s say 12. It may only take 1 spoon for a healthy person to work out, whereas for me it may take 3 spoons. Then count cooking, let’s say another 2, cleaning up after dinner another 3, and so on. Before you know it, I am out of spoons and need to rest for the night, whereas someone without disease may have plenty of spoons leftover for hours.
As important as it is to exercise, it is as important to know your limits and pace yourself. The last thing you want to do is exacerbate your symptoms. It’s important to note that my doctor never mentioned the heart issues that could arise. We only discussed how I am feeling now. But we need to start having conversations about what could happen. As I said in the beginning, be your own advocate. Learn about your disease and become the expert that you need in your life.