When the cold agglutinin patient becomes the primary caregiver
My husband and I had to switch roles during his bout with malaria
Waking groggily, the patient stretched his arm out from under the covers. Hitting the “stop” button on his phone, he groaned. It was time to eat and take his next dose of anti-nausea medicine. After giving it 20 minutes to start working, he took his malaria medicine. To get the best results, the meds have to be taken at precise intervals around the clock.
Malaria means no work will be done today or for the next three days. When caught early, the disease usually responds well to treatment. But the patient will be extremely tired during that time and for several weeks following. Malaria destroys red blood cells and causes anemia.
Malaria is an opportunistic disease, meaning it’s more likely to grow and cause problems if a person’s immune system is already weakened by another disease or treatment. Even though it’s my husband, Mike, who is sick with malaria, I am affected, too, because he’s my primary caregiver.
About 10 days ago, Mike developed a cough with slight congestion. The cold was being passed around our community here in Papua, Indonesia. Then he contracted malaria on top of it. This is a problem for me because I have cold agglutinin disease (CAD), which lowers my immune resistance, causing me to catch everything.
At least for a little while, I thought I would escape with just a cough and sore throat. The danger lies not just in being extra susceptible to passing infections, but also in my complement system becoming triggered and starting the process of hemolysis — the destruction of red blood cells — when I get sick. It is a double whammy for me.
We both were patients, though Mike was more seriously ill. I couldn’t expect him to take care of me the way he usually does. I had to step up and take care of him. Our roles were reversed.
Our weekend activities
Calling the boys to breakfast prior to them leaving for school, I thought about the day ahead. I’m glad we live close enough for them to walk because my motorcycle isn’t strong enough to carry two extra riders. Mike is usually the one who takes them places.
I then started our laundry. I had an hour to get myself dressed before our house helper arrived.
Mike remained in bed in the malarial limbo between waking and sleeping. I was zonked because I had the congestion he had earlier. At least I couldn’t contract malaria by being in close proximity to him.
Changes to my routine involved shopping, caring for the boys after school, making sure they got to their activities, and completely taking care of supper — things Mike normally does.
I have a love-hate relationship with having a house helper. The introvert in me resents having someone intruding, but this conflicts with the lazy me who doesn’t enjoy sweeping, washing up, or mopping. Because Mike and I were both sick, the lazy me won out. I was glad our helper came to work.
Over the weekend, I continued to make sure the boys were at their soccer practices. I ran quick errands on my motorcycle for drugs or food, did the laundry, and exercised our dog, Pokey. Additionally, I supervised the yard work that was contracted before we got sick.
I was worn out. I don’t have much stamina, and while I was truly glad to step up and keep things going while Mike was sick, there was a price to pay.
The tables turned again
As expected, because I developed the congestion Mike had, I completely took to my bed on Sunday. My strength further waned as I developed symptoms of a urinary tract infection. Mike remained in bed, too, though we took turns getting up to complete chores. We are such a fun couple.
I wrote this column last Monday, a week ago. Mike is taking one more day off from work. He is regaining his strength and should be ready to teach again in the morning. Me? I’m still dealing with the breathlessness that comes with CAD. It will take me a good month before I’m better. For now, I am staying horizontal and still, and working from my bed.
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
Sharon Gibbs
I totally sympathize with you and am proud of the way you conquered your situation, even though it probably doesn’t feel like a win. IT IS.
I was introduced to this disease in 2012 and for the first time it has reared its ugly, terrifying, senseless, auto-immune head. Today when I asked my hematologist to fix me. He laughed but offered no solutions.
How do you manage in Indonesia? You have more courage than I.
Mary Lott
Basically, I manage in Indonesia by staying warm and avoiding people. Warmth keeps my blood from agglutinating and avoiding people is staying away from germs. However, when things don't work well, I travel ± 50 hours to get to my hematologist back in Alabama USA. While we can't be "fixed" yet, there are drug treatments. Please read the link at the top of this page to see what the treatments might be. Good luck to you.
Martha collins
I was diagnosed with this in 2017, also at this time was told I have cirrhosis of liver, was given 5 treatments of Rituxiun, may be spelled wrong, do well so far, take 2 meds for portal valve for liver