As I navigate CAD, I am reminded that caution is just hard-earned wisdom
Getting set to update my vaccinations leads to a concern about side effects
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Note: This column describes the author’s own experiences with vaccinations. Not everyone will have the same response. Consult your doctor about whether a particular vaccine is safe or recommended for you.
I cut my visit with my dad short on Saturday and went home. As soon as I got there, I trudged up the stairs and collapsed on the bed, staying there until it was time to leave for church on Sunday. I was extremely fatigued and my legs felt as if they had lead weights around them.
Such extreme fatigue is a common symptom of cold agglutinin disease (CAD), a type of autoimmune, hemolytic anemia. My red blood cells carry a cold agglutinin antibody that triggers my white blood cells to attack and destroy them. Doctors call this anemia. I call it going back to bed and doing nothing. Ugh!
Leading up to my tiredness
This latest bout of fatigue has surprised me. On Wednesday, I was energetic enough to do a lot of yard work that involved hedge trimmers, chainsaws, and weed eaters. I expected to be tired on Thursday and scheduled a day of rest, while Friday was full of light activity, indoors and out. I even ran a few errands.
Some of those errands involved getting ready to return to Papua, Indonesia, where my husband, Mike, works at a school there. One of the agencies we work with strongly suggested we update our vaccinations and get a tetanus, diphtheria, and pertussis vaccine (called DPT or Tdap) and an oral typhoid vaccine, so I dropped by the local drugstore to get them.
Because CAD is such a rare disease, and even many physicians aren’t familiar with its idiosyncrasies and impacts, I don’t blithely follow suggestions. I question, adapt, and double-check recommendations against what I’ve learned about hemolysis, cold exposure, and especially sensitivity to germs and bacteria. So when it came to these two vaccinations, a little more information was required.
Why I went ahead with it
I have no problem getting shots. Compared with getting my very slippery, evasive, fleeting, and shifty veins stuck for blood draws, injections aren’t stressful at all. Plus, after experiencing a colleague die from tetanus in Papua, I do not want to take any chances with that disease. So, I got the DPT vaccine.
I didn’t expect any trouble from it. It’s an inactivated vaccine and cannot replicate or cause disease. It’s considered a safer vaccine for immunocompromised people. The day after getting it, I didn’t want to get out of bed, though I’ve been advised that the vaccine likely isn’t the cause of my recent fatigue.
Why I am waiting
I am even more unsure about the oral typhoid vaccine, which contains a very small amount of the live virus, prompting the body to generate enough antibodies to overpower it and provide immunity. The problem for CAD patients is that we have a compromised immune system, and such a vaccine has the potential to make us sicker.
I have an appointment with my hematologist-oncologist later this month, and I hope I will be approved to return to Papua. I intend to discuss with my doctor whether I should take the typhoid vaccine.
This is typical of managing CAD, as a lot about the condition remains uncertain. For me, living with CAD requires a careful balance between protecting my body and ministering to others in a remote province.
I’m glad I’m not alone and can seek guidance from those who understand CAD better than I do. As I navigate the choices I have to make, I am reminded that caution is not fear but wisdom, and hard-earned at that.
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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