I prepare for a doctor’s appointment by compiling a list of concerns

It's crucial to have a comprehensive discussion during the annual checkup

Mary Lott avatar

by Mary Lott |

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I’m making a list and checking it twice. And then twice more after that. I mustn’t forget what I want to discuss.

I have an annual exam at the doctor’s office coming up in mid-June. Big sigh! I’m a little anxious about the appointment.

I have cold agglutinin disease (CAD) with accompanying chronic lymphocytic lymphoma. I’m not very sick, but I’m also not always quite well. I was diagnosed in May 2018, and since then, it’s been a six-year roller coaster ride.

CAD is a rare autoimmune disorder in which self-targeting antibodies attack and destroy red blood cells at low temperatures. This results in various symptoms. As I understand it, if I ignore the CAD, my lymphoma will become active. Obviously, that will entail its own difficulties.

Thus, I return to the Spencer Cancer Center in Opelika, Alabama, every year to have my blood analyzed and to chat with my hematology-oncologist.

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6 pressing issues to discuss

At present, I have six topics I want to bring up. Several are related to one another, so perhaps he’ll answer my follow-up questions while responding to my primary questions. I don’t know. Doctors are so hard for me to predict.

The first question is, “Why am I so tired all the time?” Since January, I’ve become increasingly fatigued as the days drag by. I can’t sleep long or deeply enough to be satisfied. I get up in the morning, brush my teeth, and go back to bed. Such strenuous activity is overwhelming.

Another related complaint is depression. I can’t logically explain it. Some bad things have developed recently, but I’m seeing my way through them. Nevertheless, a general feeling of hopelessness persists.

Depression is a related condition of CAD, which helps me to know. I also take note of the blessings I enjoy by living my life “coram Deo,” which means “before the face of God” or “in the presence of God.” I acknowledge the good things that have happened to me. Still, I want to discuss it with my medical team.

Next, I’ll bring up what seems to be a low-level, chronic urinary tract infection. Is there any way to clear it up? Or should I continue fighting it as I’ve been doing, by drinking copious amounts of water and cranberry juice (which I loathe) and by using a pain reliever to help with the urgency? I need help in dealing with this persistent ailment.

At times I “list to port” (lean to the left) when I walk and am known to trip over a line on our floor tiling. I bring this up despite it seeming to be a neurological issue rather than a circulatory one. However, could my anemia be causing it? It’d be nice to have the opinion of a professional instead of just my speculation.

The final two topics would help my peace of mind. The first is weight gain and possible diabetes. I’ve gained weight this year, and I blame my inactivity for it. Still, I want to get my weight under control before I develop diabetes. Diabetes runs in my family, and I don’t want to add that to what I’m already facing.

The last topic is mildly frivolous and involves my father. This year he turns 99 years old. He lives by himself and does his own gardening and shopping. What he doesn’t do is take advantage of the well-earned privileges of his age.

I, on the other hand, get tired every now and then when walking through a parking lot. I’m going to ask my doctor to help me with an application for an accessible parking permit. Then, when my dad’s with me, he’ll have the advantage of parking close to the front doors of a restaurant or a store. He’s earned it, and it’ll also help me out.

I haven’t yet purchased my plane tickets from Papua, Indonesia, where I live, to my other home in Auburn, Alabama, which is adjacent to Opelika, home of the cancer center. But there’s no sense in waiting until the last minute to prepare. I visit the doctor only once a year. I need to ensure that all my questions are answered.

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.


Hazel Schmidt avatar

Hazel Schmidt

I love reading your articles. I don’t feel like I’m going mad with this disease. I wish more doctors, nurses and labs knew more about this disease. I live by myself and hate all the driving to get blood work done and all the side effects with CAD. Your articles let me know I’m not alone in this journey. Thank you

Mary Lott avatar

Mary Lott

One of the things I hate about this disease is that doctors, nurses, and phlebotomists don’t believe us when we tell them how our blood should be handled. If I hear again, “we need to do a second draw …” I think I’ll start screaming.

But, we’re not going crazy. THEY are just uninformed.


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