When the Ground Beneath Me Starts to Move

Tito Oye avatar

by Tito Oye |

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As a child, the ground seemed like a sure thing. It was reliable and unshakeable, no matter how hard I jumped on it and no matter what I dropped.

You can imagine my surprise when I learned about earthquakes. I couldn’t believe that something as strong, solid, and firm as the ground wasn’t as safe as I once thought, and for some time, I feared it. I’d tread as gently as I could, avoiding every crack in the concrete for fear that the pressure of my footsteps would cause the ground to split beneath me.

Eventually, I realized that my fear was irrational. Earthquakes aren’t common here in the U.K., and I wouldn’t cause one just by walking. I went about my life and trusted that the ground was stable.

Fast-forward to the present day, and I feel like the ground beneath me has shifted due to a complication with my sickle cell treatment.

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What a Top-up Blood Transfusion Looks Like for Me

After years of using hydroxycarbamide, also known as hydroxyurea, my care plan changed, and in May 2019, I began receiving monthly red cell exchange transfusions. To explain the treatment simply, sickle cell disease affects the blood’s ability to carry oxygen, so replacing my blood with healthy donor blood can help to prevent related complications.

For years, I was excited about this treatment. It has significantly reduced the number of crises I experience as well as the severity of my symptoms. I was grateful that it worked so well for me. Like the ground, it felt like a sure thing — but this belief has started to change.

In December, I booked a last-minute flight to Nigeria to spend Christmas and New Year’s with my family. In the past, traveling has been a major crisis trigger, so I rescheduled my routine transfusion to take place before my trip. I wanted to ensure I was as healthy as possible.

On the day of my transfusion, the procedure was delayed. It’s normal for me to wait up to an hour for the nurses to set up the apheresis machine and begin my treatment, but on this day, I had to wait much longer than normal. A nurse eventually disclosed to me that it took them longer to find donor blood for my transfusion because I had developed antibodies to the blood given to me during my previous transfusion. This further narrowed my pool of possible donors.

The nurse explained this calmly, giving no indication that I should be worried. However, my heart sunk in my chest. My mind twisted her statement into “Blood transfusions are no longer a sustainable option for you.”

I began to fear for my future. If I could no longer receive transfusions, my quality of life might drop drastically. As the nurse hooked each bag of donated blood up to the machine, I worried that it wasn’t a close enough match and would cause me to develop even more antibodies, eventually forcing me to find a new form of treatment. Now, when I show up for my transfusions, I feel anxious, like when I realized that the ground isn’t as stable as I thought it was.

I have no control over whether the blood I receive is the best match for me. I just have to trust the healthcare professionals and hope for no further complications.

Have you had a similar experience with treatment? Feel free to share in the comments below or in our forums.


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.

Comments

Ajayi Anuoluwapo avatar

Ajayi Anuoluwapo

Thanks for giving insights on the treatment you use.. I’m a 23 year old sickle cell patient that resides in Nigeria.. and currently I use hydroxyurea.. been on it over four years now.. can you share the reason why you switched from using hydroxyurea to red blood cell transfusion? Also how
Often do you get the transfusion? Could you also give some relatable advice on how to combat Malaria considering the environment I live in ( Nigeria) cause I usually come down with malaria almost every month

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