What I’ve learned about sickle cell-related hospital admissions 

Hospital admissions can feel overwhelming when you live with sickle cell disease (SCD), regardless of where you receive care. Here in Nigeria, the experience can differ from what someone might see in the United States, but the emotional weight of an admission can feel remarkably similar.

Research commonly identifies vaso-occlusive pain crises as a major reason for hospital admissions among people living with SCD. My experience, however, has been somewhat different. Aside from my first memorable admission, many of my hospital stays resulted from worsening anemia, surgical procedures, respiratory complications, and infections.

Over the years, family support, advocacy, resilience, and dedicated health professionals have helped me get through these hospitalizations.

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My first memorable admission

Doctors diagnosed me with SCD when I was only 1 year old, so I have no memory of my first admission. Afterward, my parents managed most of my pain crises at home. My next hospitalization — the first one I remember — happened when I was 11, following an unusually intense crisis. The pain became so severe that my parents took me to the emergency room for the first time.

A doctor took my medical history, examined me, and admitted me to the children’s ward. Before I could go, however, my mother had to sort out the payment.

My pain management experience reflected what was typical in many Nigerian hospitals at the time. It was also my first experience with opioid pain relief.

Accessing a vein was the first challenge. The first doctor could not establish the intravenous (IV) line, but another succeeded on the first attempt. I felt relieved when I finally received a dose of pentazocine, an opioid commonly used for severe SCD pain in Nigeria.

The medication initially felt almost magical. I had never experienced such dramatic pain relief. Unfortunately, the relief lasted less than an hour before the pain returned at a level I had never experienced.

The doctor had left after documenting my care plan, leaving the nurses to carry it out. I remember crying and asking for help, but a nurse explained that the treatment plan called for the medication every six hours. They could not review or adjust the plan until the next scheduled dose. I simply had to endure the pain for hours.

That experience contrasts with patient-controlled analgesia available in some U.S. hospitals, where patients can have more control over certain aspects of their treatment. For me, the IV medication provided only temporary pain relief, but the admission helped me recover from the crisis. I also received IV fluids and antibiotics, and after six days, I had improved enough to go home. I remain grateful to the health professionals who cared for me.

At the time, I stayed in a general ward with many other children. During my stay, I witnessed two children die. Leaving the hospital after recovering thus felt even more meaningful.

Advocacy is crucial

Another admission for a severe hemolytic crisis and worsening anemia in my early 30s showed me how important advocacy could become. My hemoglobin had fallen to about 4.7 g/dL, and I needed a blood transfusion. After the team established an IV catheter for the transfusion, I developed a very high fever of about 40 C (104 F).

My mother and I alerted the nurses, but I did not receive a physician review for almost two days. As my condition worsened, my mother became increasingly frightened. Eventually, she confronted the care team, cried, and demanded an immediate physician review.

Her advocacy prompted an urgent medical review and a change in my treatment plan. I subsequently began improving.

That experience taught me something I have carried throughout my life with SCD: Having someone who knows you and can advocate for you during a hospital admission can make an enormous difference.

I have also learned to create some comfort for myself during hospital stays. Whenever we could afford it, I preferred a private ward because it helped me feel more at home. I would bring my television, decoder, and laptop to create a familiar environment.

Those small comforts supported my mental well-being during difficult times. Familiar belongings made the hospital feel less intimidating and helped me stay positive while recovering.

My experiences have taught me that managing SCD in the hospital involves more than medication. It also requires advocacy, communication, emotional support, resilience, and people who will stand beside you when you are too unwell to speak for yourself.

Note: Sickle Cell 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 Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.