What a Top-up Blood Transfusion Looks Like for Me

Mary Shaniqua avatar

by Mary Shaniqua |

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I am scheduled to have a blood transfusion today. So, I want to take this opportunity to explain how I prepare and what this means for me.

I have previously written about my treatment and medication regimen. In that column, I explained that I underwent exchange blood transfusions every four weeks. During these transfusions, sickled blood is slowly removed from my body and replaced with healthy donor blood.

As a result of the pandemic, my local hospital has put all elective surgeries on hold, so my blood transfusion program has changed. I now have top-up blood transfusions every six weeks. This process is very different than the one I am used to, as it involves a few units of blood being delivered through a cannula usually inserted into the hand.

Both approaches come with pros and cons. For example, the exchange transfusions are beneficial for maintaining my iron levels; however, I have to spend far more time in the hospital and they cause significantly more scarring to my skin. The top-up transfusions are quicker, as I only spend the transfusion day in hospital. But I am conscious that iron overload is a risk with top-up transfusions.

Oftentimes, when I am due for a transfusion, my body can feel it. As I inch closer to my transfusion date, I tend to experience increased fatigue and pain. This is not always the case, though. Before my most recent transfusion, I was pretty much bedbound due to pain. This time around, though, I have had no pain and very low fatigue levels.

The first thing I do to prepare for my transfusions is to have a blood test. I have the blood test no earlier than 48 hours before my scheduled transfusion time. This test will advise my healthcare team of my sickle percentage and other vitals. This information is used to find donor blood to match me with, and also determines how many units of blood I am to receive. This differs each month based upon what my bloodwork reports. On average, I tend to receive about three units each time.

I then undergo a COVID-19 screening 24 hours before my transfusion.

On the day of the top-up transfusion, a cannula is placed into my arm and the donor blood is transfused into me, similar to a drip. My veins are pretty small, so to help with successful placement of the cannula, I try to drink as much water as possible before I get to the hospital.

Additionally, I wear many layers and use heating pads on my arm. When we are hot, our veins rise to the surface of our skin. So, I try to make myself as hot as I can to help the nurses successfully locate a vein in my arm for the cannula.

Each unit of blood takes about three hours to infuse, so it is a pretty long and boring day for me. I try to use the time to rest, read, or just chill and listen to music.

Once the transfusion is complete, I always feel pretty lethargic, so I go home to rest. However, I start to notice the benefits of the transfusion pretty quickly. By about the second day, my energy has increased and my daily chronic pain has declined.

Being on a transfusion program means I regularly miss a few days from work. If you have staff members within your workplace who are on a transfusion program, it is important that you permit them the necessary time off.

Once my exchange transfusions resume, I will be sure to write a column explaining that process.

If you are able, please consider giving blood. You will be directly responsible for improving the quality of life of people like myself who rely heavily upon blood transfusions.

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Note: Sickle Cell Anemia 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 Anemia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell anemia.

Comments

Jacqueline Medler avatar

Jacqueline Medler

Mary, you are truly a brave SCD patient. To do this program every four to six weeks is heroic. Thank you for this forum of your Life.

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