Five things I do to have a positive patient experience

I parked my car with a feeling of déjà vu. This was my sixth trip to the hospital this year. I wanted to wait to be seen by my medical team, but my fever kept rising, so I decided to go to the emergency room.

It was the first time I entered the emergency room doors on my own — an ambulance had brought me the previous times — and I didn’t know how much of a wait I’d have. But immediately upon registering with the front desk, I was taken to an exam room. I learned that saying I was a cold agglutinin disease (CAD) patient with an underlying cause of lymphoplasmacytic lymphoma puts me high on the triage list.

I’ve been able to manage my CAD fairly well until recently. I am feeling better overall, but I’ve had some setbacks that have required blood transfusions.

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My strategies

Through these repeated hospital visits, I’ve developed some practices that help things go more smoothly. I’ve written down five of my favorites.

• Keep a backpack. It should be small enough to fit under the airplane seat in front of me, and packed with essential items — a change of clothes, a hair dryer, deodorant, makeup, and anything else I’d need to help me be ready to face the world when I leave the hospital. Since my surprise transfer to the emergency room in February, I keep my go-bag in the trunk of my car when I see the doctor.
• Diplomatically reject a course of action that doesn’t seem correct. During my last hospitalization, I stopped a blood draw because I didn’t see warmers prepared or that someone was waiting to walk the blood to the laboratory. Mishandled blood results in inaccurate readings or even no readings, but for me, it means a very painful re-stick of my elusive blood veins.
• Get out of bed when I can, even if it’s to sit in a lounge chair. Better still, I try to walk a few steps. When I’m sedentary, I develop headaches and retain fluid in my joints. During my first hospitalization this year, my fingers became so swollen I couldn’t wear my wedding ring. Movement helps get the fluid circulating, so I move about when I can.
• Plan my first day after discharge as a day of rest and reorientation. While my life stopped when I was hospitalized, the rest of the world didn’t. There is almost always personal business that needs attention. I’ve also learned that I often need more rest than expected. I plan as few obligations for that day as I can.
• Be considerate of all hospital personnel. Doing this helps hospital stays go more smoothly. I work hard to learn people’s names and roles, and I am aware of shift changes, as responsibilities increase then. Shift changes are not the time to request a Diet Coke. The benefits to the patient are immeasurable. I have always been treated with the utmost courtesy and professionalism, but food servers and housekeeping seem to operate with a little more efficiency when I address them by name and say thank you.

Five easy measures — preparation, self-advocacy, gentle movement, thoughtful recovery, and simple human kindness — change a hospital stay from a time of helplessness into one of greater control and dignity.

A little courtesy ripples outward, easing my own journey, while brightening the days of those caring for me.

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.