Having a rare disease diagnosis has been one of the most frustrating situations I have had to deal with. That is it in a nutshell; you are left to just deal with it. There is currently no cure for cold agglutinin disease (CAD), there is only symptom management. The treatments available are promising in that you could experience “a remission” but they can also come with some serious side effects.
As I have expressed in the past, my hemoglobin (HGB) levels are relatively stable in the 10-plus range, and that has helped me avoid situations that can cause exasperation.
The weather has been beautiful for the past couple of weeks with just a couple of cold days dotted here and there. I was feeling fantastic, as if CAD had miraculously gone away. Then, last week, out of nowhere, I felt weak for 2 days in a row for absolutely no reason. I would wake up completely fine and then after a couple of hours, I would progressively feel weaker. It just did not make sense.
CAD is such a frustrating disease, I can do all the yard work in the world and feel completely fine for weeks, and then on another day, I could do some small tasks and suddenly feel too weak to do anything else.
In the previous year, I had no symptoms during the warm months. The only time that my HGB would fluctuate was when I would have taken an antibiotic for an infection or from the infection itself, had stomach issues, or had my COVID vaccines. Otherwise, I felt completely fine and my HGB stayed above 10.
Read more about experimental therapies for CAD
So, what has changed? The only thing I know for sure is that between now and then was that I had COVID in November. It has been documented that COVID seems to kick off some autoimmune diseases and CAD is one of them. Could I be experiencing some weird residual effect that I cannot feel but is still affecting my system?
I need so badly to understand why things are never consistent, but answers are difficult to find. That led me to turn to my Facebook group and pose my question: “How can I be in the 10s and still experience CAD symptoms?”
The responses were overwhelming. And disheartening. The CAD patients that responded are also in the “safe zone,” being in the 10 and higher HGB range. One such patient’s HGB was 14 and she expressed that she also does not understand why she would have any symptoms at all. Another said that she is also in the10s, and she too could not understand why she would have CAD symptoms. Still, there are others whose HGB levels are everywhere in between, and they too are having a tough time managing their symptoms.
These responses were not at all what I was expecting. I specifically remember speaking with my doctor about this. We talked about the appropriate HGB range, and I do remember he said that above 10 is the number that is not usually recommended for treatment. It is also the number where I would feel normal. So, I took this as gospel and believed an HGB above 10 meant my symptoms would be gone and I would continue to enjoy the normalness I experienced last year during the warm months.
Unfortunately, this is not what he meant; it only means that I may not need to be treated. I know that we all will experience hemolysis differently and that our bodies will also differ in how it compensates. So going by how others feel is futile, but still, they are all I have.
I guess what I am trying to say is that it is frustrating that my body has staged a coup and there is nothing I can do about it. I am hoping that we as patients can bring enough light to CAD and that researchers can obtain enough funding that allows for extensive research. If we could find a way to avoid this altogether without continuous treatment, then I and many others like myself can live a healthier, happier life.