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I have long been surprised by the lack of information given to me by my first doctor following my diagnosis of cold agglutinin disease (CAD). After all the tests and shock, I was offered the first line of treatment. I decided to wait and see if I could manage my symptoms. At the time, there were just a few. I could not control my body temperature and I had overwhelming fatigue. Other things were going on, but I did not attribute those to CAD, because I did not know what to look for. 

Luckily, I was informed of a Facebook group facing the same challenges as me. This group has helped me tremendously. Participants range in age from 40 to 80 years old, covering both primary and secondary levels of CAD. I now have a wealth of knowledge that I wish my doctor had provided. What I found shocking was that they, just like me, had little to no guidance from their doctors. 

I have been asked for my opinion a few times by different companies trying to get a better understanding of what CAD patients experience. While this is important, I think it would be more beneficial if these were questions that were covered in my first doctor’s visit. While everyone experiences different symptoms, I can only tell you what I have felt in the brief time I have had this disease and what I have learned to do by trial and error.

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Doctors are our first line of care. Wouldn’t it be pertinent for our doctors to be armed with a list of what you may experience and viable options for how to handle those symptoms when you return home? 

Read more about the diagnosis of CAD

With that said, it was important for me to compile a list based on my experience and what I have learned from other CAD patients. For example, I and others have experienced extreme pain in the head, which most patients describe as swooshing in the ears. But for me, it is an immense pressure sensation. It started a few years back. I found that if I walked into buildings, I would suddenly hear the heating and air conditioning system followed by pressure so bad I would have to hold my head and leave the room. I thought it was my sinuses because I have always had sinus issues. 

I later learned it is a symptom of CAD. What I have also learned is to stop what I am doing in those moments and take deep breaths and exhale slowly and suddenly the “swooshing” stops. I am thinking it must be a lack of oxygen to the brain due to hemolysis that I am unaware is happening.

Another significant issue is fatigue. If you are not paying attention, it can come on like a ton of bricks. It feels like you suddenly developed the flu. What I have also learned to do is the second I start to feel weak, I lay down, take slow deep breaths, and relax. After about 20 minutes it will usually subside. It seems that I have a certain amount of stored energy that is allotted for the day. When I use it up, I need to lay back and allow my body to recharge.

Bedtime is by far the hardest time to get rightm especially when the seasons change. Typically, by the time I figured out how to deal with winter, it is spring. Spring in the Northeast is unpredictable, as well as the fall. These times of year the ambient temperature feels exactly right but unfortunately, it is not. It is sneaky. You feel warm, so you go to bed with fewer blankets only to wake up hot and sweaty. You throw the blankets off and then you’re cold. At that moment you realize you have been hemolyzing. 

This brings me to dehydration. Just as hard as it is to stay warm, I have found staying hydrated is hard and I drink a lot of water. This is something that I must watch. I write numbers on my water bottles to make sure I hit 8 every day. If I do not, I experience gastrointestinal issues, which makes me weak. It has to do with the fact that my body is already compensating for the lack of hemoglobin, and it cannot seem to deal with both at the same time. When this happens, all my energy is depleted, and I am done for the day.

These are just a few of the symptoms that I have experienced, and they can happen independently of each other or all at the same time. When they occur at the same time, I know I had become cold at some point, and I did not realize it. If doctors at the time of diagnosis would provide a list of possible symptoms, when they are likely to happen, and possible ways to cope with them, I bet you would find that patients would be able to manage their disease better.