Exploring some of the common complaints that CAD patients have
These everyday frustrations seem to be prevalent in our community
I tasted the blood from my lip before I realized I had bitten through my skin. I forced the ends of my lips upward and mentally prayed for patience and grace. Taking a deep breath, I explained — yet again — why I travel all the way to the U.S. from my home in Papua, Indonesia, for bloodwork.
Because my cold agglutinin disease (CAD) appears under control, most of my new acquaintances aren’t aware of the adaptations I’ve made or why they’re necessary. It can be frustrating to explain over and over why I travel around the world for bloodwork, as well as how CAD symptoms affect me. For instance, some people assume I don’t like to be out and about, and I have to explain that I often stay home because fatigue rules my life.
Providing these repeated explanations can be tedious and irritating, even when I’m talking to different people. The following are a few of my other regular frustrations, which fellow “CADdies” may find relatable.
Getting bloodwork done correctly
CAD is a rare subset of hemolytic anemia. It’s not yet fully understood, and many medical professionals haven’t even heard of it. Even if they have, most have never encountered a CADdy and don’t have experience treating the disease. In the Facebook forum I read, recommendations are often sought for a good hematologist who understands the disease.
Because CAD isn’t well understood, one of the most common complaints patients have — apart from the disease itself — is a perceived dismissive attitude from those who handle our blood.
Our red blood cells (RBCs) break apart at colder temperatures, resulting in incorrect readings if lab technicians mistakenly allow our blood to cool. Because CAD is such a rare phenomenon, CADdies have to be proactive in requesting the correct procedures. Unfortunately, there have been times when I’ve made this request, only to be met with a condescending tone, as if the staff member were placating an ignorant child.
They would need placating if I loudly verbalized my displeasure! Blood sticks hurt, and I’d like to avoid unnecessary ones. So I point out that if an error is received and my RBCs cannot be read, then it is my arm that will get stuck again. It’s crucial to get this right.
Tired of being tired
I am tired of it taking so long for me to achieve just a few days of strength and energy. In March, I had an injury to my nose. After three months of medication and bandages, it is finally healed. Recovering from a cold takes at least six weeks. Short errands wear me out.
Earlier today, I hopped on my motorcycle and rode to a store a short distance away. I bought a glass pitcher and a plastic watering can, then went to a farm store to purchase something for the plants in my yard. After that hourlong trip, I parked my motorcycle and went to bed. Supper was fast food!
While injuries or common illnesses aren’t caused by CAD, the disease definitely slows down my healing and recovery process. It’s frustrating to feel tired all the time.
On days when these negative experiences seem to pile up, I find I need an outlet for my emotional pressure cooker. Thankfully, I’m part of a Facebook group where members often share methods and suggestions to resolve these common complaints. The forum relieves some of the pressure I experience and reminds me that I’m not alone.
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.
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Comments
Sandra
You are not alone. The fatigue is something you cannot explain, because no one can see it or feel it. I always say i feel like I am carrying 25 extra lbs of weight on each arm and legs. I am happy to have found this sight as an outlet. Or to just read what others are feeling. I have learned so much more than any Doctor had offered in so many ways. Best of luck to you. Sandra
Gloria
I’,agree how frustrating t is when you can’t share, and more so when few doctors are knowledgeable. I live in US and am very fortunate to have the access that I do, but I I would love to meet someone else to share with. Hope,you continue getting well.
Joe Gx
Hi All,
I live in Australia and like to discuss or perhaps get another’s person’s perspective of how they are navigating through their own CAD journey post diagnosis and treatment.
I was diagnosed in Feb 24 with CAD. Shortly after my diagnosis I was referred to a haematologist for further investigative tests and treatment.
Over the last 3 months I have gone through all the standard tests, completed a cycle of autoimmune therapy (Retuuximab) and a blood transfusion. All pretty much unsuccessful. My HB is currently at 85 and dropping. I’m due to meet with my specialist next month. In the meantime I’m curious if anyone else has had a similar experience and able to advise what 2nd line treatment or any treatment can be undertaken from this point onwards? Is this end of the line in regards to other treatment options? Or is it just a matter of managing the symptoms with no other treatment alternatives?
Mary Lott
Joe, It is really a little early to tell if the rituxamab has been effective. It often takes two to three months for results to develop. Please be patient. In the meantime, try to stay warm, and even avoid breathing cool air. I do not know if there are any alternative therapies in Australia. My doctor, in my check-up last week, reminded me the best management tool is to stay warm. Can you move more north, where there is a tropical climate for these winter months? Best of luck to you!