In online forums, CADdies comment on cold conditions and more
For the newly diagnosed and veterans alike, CAD forums are a vital resource
“The main thing is that you must …”
I stopped my advice-giving and tried to continue speaking slowly. I gasped for air and was surprised that I could finally draw a deep breath to fill my lungs. So I resumed delivering my gardening instructions. Actually, no, I did not.
As I tried to speak, I was overcome by a coughing fit. My daughter led me to a swing so that I could focus my energy on relaxing, which helped. But now I couldn’t speak above a whisper.
Little did I know then that this episode, which happened in about 2007, would start me on a medical quest that culminated with a diagnosis of cold agglutinin disease (CAD).
CAD is diagnosed when a person’s red blood cells clump together — called agglutination — and then dissolve below certain temperatures. It is challenging to diagnose because it is seen so rarely.
Back in 2007, when my daughter sent me to the emergency room, doctors first looked at my lungs, and then my abdomen, and, finally, my digestive system. They didn’t find anything, so the hunt was called off. At that point, I wasn’t experiencing any other symptoms.
Because CAD has so many symptoms and affects us “CADdies” differently, we often chat together online to share our experiences. We’re all searching for our “normal.”
Questioning normality
I checked my Facebook page last week, and a CADdy friend named Athena had written, “Somebody help me understand what’s going on with the weather. Is it going to freeze? And when?” It is imperative that we CADdies pay attention to January’s winter weather, because a sudden blast of Arctic air could send us to the doctor.
Similar questions posed to online support groups garner sympathy and shared coping skills. Topics might include something like, “What are we wearing? Does it work?”
I haven’t found much, though, on one issue that affects me: breathing cold air. As I noted in a previous column, breathing cold air feels like shards of ice piercing my lungs. But I realize that other CADdies may react differently. Athena huddles under an electric blanket.
One of the most common questions I see is whether a particular symptom is “normal.” Often, questions like this will begin with a phrase like “Does anyone else have …” This will proceed to something like “extreme tiredness following a cold,” or, “a drug to make more red blood cells?” We’re asking for clarification of something that occurs to us, but often the official replies from our medical team don’t completely answer our questions, or at least not in a timely manner. Sometimes, those answers just plain don’t make sense. But in our online groups, we’ll usually receive a satisfactory answer within minutes.
To take iron or not to take iron?
Our questions often revolve around vitamins, especially iron. A common assumption is that anemia means iron deficiency, which is then interpreted to mean a person needs to take more iron. Early in my diagnosis I asked my doctor about this, but the answer didn’t make sense to me at the time. He said I didn’t need iron.
Therefore, I stopped taking it, but it wasn’t until last autumn when I learned why. According to hematologist and oncologist Jeremy Lorber, of Cedars-Sinai Medical Center in Los Angeles, we CADdies have iron — we just don’t have enough red blood cells to carry it.
In the forums, during the winter months, we often ask one another cold-related questions. A major concern is hemolysis, or the destruction of red blood cells. We don’t know how to tell when this is happening. If we suspect there is blood in our urine, was it caused by hemolysis or a urinary tract infection (UTI)? Further, do CADdies frequently experience UTIs?
Newly diagnosed CADdies may often wonder, “Is this normal?” Another might ask, “My husband is experiencing problems with severe itching, which is driving him crazy. Is this symptom related to CAD?” Yes. Yes, it is.
The knowledge of the whole is greater than the knowledge of the parts
The upshot is that we often don’t know whether to call our medical team with our burning questions. Chatting together online helps to eliminate many of them. That coughing episode I had so long ago could’ve been explained in my CADdy forums. That way, my doctor’s time wouldn’t be wasted by chasing a common symptom.
What CADdies learn by chatting is that everyone experiences CAD and its symptoms differently. Some patients are able go outdoors in the cold. Others, like me, must hibernate when the temperatures drop.
I’m thankful for my CADdy friends who chat with me. They keep me sane.
Note: Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.
About the Author
Ron
My wife has CAD, MDS and Multiple Myeloma. At first the oncologist thought the cold agglutinins symptoms were secondary to the multiple myeloma (which was smoldering), they put her on Darzalex, Velcade, and Dexamethasone for about 3 months and the symptoms went away (purple nose at cooler temps including air conditioning, and fingers and toes turning color). So they stopped treatment. Two weeks later a tsunami of blood transfusions began. A recent bone biopsy was not done correctly in identifying a abnormal B cell population, labeling them as Lambda related. However, when we explained to the oncologist that if the multiple myeloma was in remission, why would the cold agglutinins symptoms still be present? They reviewed by biopsy again, and found the error. The abnormal B cell population was actually Kappa restricted. Which meant they B cells were aligning with the IGM antibodies and attacking the RBCs by causing them to clump. So although she had a MDS red blood cell production issue, she had hi-jacked IGM antibodies converted to killers of red blood cells! The Velcade she was taking had suspended those abnormal blood cells previously from aligning with the IGM antibodies. This was proven since she had a bone biopsy just prior to the suspension of the Velcade and the abnormal B cell population was small. Two months later (most recently) she another biopsy and those cells had doubled. So, it really pays to investigate all lab reports and symptoms and leave no doubt. She's back on Velcade now. It's all so complex.