When I was first diagnosed with cold agglutinin disease (CAD), my symptoms were at an all-time high. I felt terrible. My arms and legs weighed a ton and just getting up made me feel sick. It’s been a couple of years now and I have learned to listen to my body and, of course, how to stave off exacerbations. Sometimes I just get cold no matter what I do, and I must deal with it.
There are many lifestyle changes one can make to help manage CAD. Diet is one of the logical changes to address, along with exercise. It sounds counterintuitive but I avoided exercise. In hindsight, my thinking makes zero sense.
When I get cold, my heart works harder to pump blood throughout my body. It is for this reason that I had abstained from exercise. I had felt so bad at the time that there was no way I could have anyway.
Continue Reading
When I started to get better and my hemoglobin (HGB) stabilized in the 10s, I still avoided it. I would have these weird bouts where it felt as if I had just so much energy allotted for the day. My life resembled the spoon theory; 1 spoon to get out of bed, 4 to go to work and do my job, etc. When I hit my allotted 10 spoons, I was done.
Read about experimental therapies for CAD
What I didn’t realize is that I could do so much more once I was able to get out of my head. As I stabilized, I started doing Tai Chi, but very little and not often enough. What I learned is that exercise is harder for someone with hemolytic anemia and, I would assume, for anyone with chronic disease. But it’s necessary.
I started to realize that the more I stayed on the couch or sat around, the worse I felt. It is true a body in motion stays in motion. I was always able to run around wearing 10 hats to get it all done with no issues but now I could only do a couple of tasks.
This is probably not for everyone, but I learned to push myself each day. Yes, I was tired I didn’t want to, but I just got up anyway and did an extra task. It didn’t matter what it was as long as I wasn’t just sitting. I got on the treadmill and started out with 5 minutes at a time. That was a tough 5 minutes. I just kept trying each time, adding a minute if I could, and so on. Eventually, I got up to 30 minutes and I feel great.
There is also a lot of research that supports that people with anemia need to do their part. You can do this by swimming, as long as the water’s warm enough for you, low impact exercises, and walking. The International Journal of Health Sciences Research states that these exercises can significantly increase your blood parameters such as hemoglobin concentration, leukocyte count, and neutrophil percentages, while decreasing lymphocytes. It also helps to saturate your organs with fluids. These are exactly the numbers we look at as CAD patients.
While there is plenty of information out there that centers on anemia with iron deficiency but very little on anemia in people with CAD. It’s important to pick through and be selective to make sure that the diet and exercises they are talking about match what we have.
As I mentioned earlier this may not be right for everyone. There are plenty of people with CAD that are a lot older, and movement may be limited. While there are others whose CAD symptoms do not let up even in the warmer months. I would highly recommend asking your doctor about what exercises, if any, are right for you.
Right now, the weather has been hot, and that works well with CAD. I have felt the best I have felt in years. I am taking advantage of that by using this time to build my body up. Yes, when the cold comes there will be quite a few hurdles, but I am doing everything in my power while I can to make my heart stronger for when the tougher days come.
