Being a CAD patient amid the ever-present reliability of constant change
Sometimes I have energy to shop and garden; sometimes I can't get out of bed
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My summer came to an end last week. It is still hot here in Alabama, and the days are still long with daylight. But summer is over. My husband, Mike, has gone back to Indonesia.
I remain here in Auburn because my blood work has not yet reached a stable level, and there is no treating it in Papua. Staying this extra time in the U.S. will help avoid the need to make an emergency trip later. That’s the uncertainty of cold agglutinin disease (CAD) for you.
CAD is full of flux and change. Sometimes I have sufficient energy to shop, garden, and swim. Sometimes I have just enough to push back the covers on my bed, sit up, groan, and then snuggle back down. It is frustrating to have such extremes.
I had to resolve a family issue recently that left me feeling abnormally fatigued, something Jeremy Lorber, MD, a hematologist-oncologist at Cedars-Sinai Cancer in California, calls out-of-proportion fatigue. According to Lorber, stress triggers the complement system, resulting in hemolysis and worsening anemia. Because of my fatigue, I did not help my husband pack much for his trip.
My next round of doctor’s appointments is coming up in two weeks, first the blood work, then the results.
A constant companion
Even if I didn’t have CAD, things would still feel fluid and changeable. When I try to look ahead, I don’t see the next steps.
At 71, Mike and I are at a stage where things are changing and we will have to adapt our lifestyle to them. We know decisions will be made about our lives.
Since 1995, we have enjoyed the gracious privilege granted by the Indonesian government to teach at a school in Sentani. Most people our age have stopped working by now, and we don’t really want to do that. But our visas are expiring and might not be renewed again because of our age.
I want to get back to Papua as soon as possible. Staying in the U.S. over the winter is difficult and would require new strategies to handle the cold weather. Last winter was rough. I tried to stay warm by wearing gloves and thick socks and by using chemical hand warmers, but they didn’t help much. I often experience acrocyanosis, a bluish discoloration of the hands or feet, and livedo reticularis, another discoloration that involves the peripheral blood vessels. Plus, life is easier when Mike is around to smooth over the rough edges.
A friend asked me recently what I need to be able to join Mike overseas. I had to tell her I am not sure. I’m not sure if I will get good results from the doctor. More uncertainty. Constant change.
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.
Ann
Retirement is great - spending the winters in Mexico - it is warm and enjoyable - we like playa del Carmen - a big expat community - join some Facebook groups , make your plan to stay warm
Bourgeois
Voilà des années que je traîne cette maladie . Une fatigue constante avec des pics quand l’hémoglobine baisse . Pas comprise par mon entourage . J’aimais tant le jardin , je ne sors quasiment pas de novembre à mai . Faire attention constamment . Ça envahit la vie . Le froid , mais aussi la moindre petite infection . On se sent seule même avec les médecins qui proposent transfusion , chimiothérapie que je refuse , rituximab bien supporté . Intuitivement , et çà compte , je refuse la chimio . L’état psychologique est important , et un sentiment de confiance envers le traitement nécessaire