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The life-changing power of exchange transfusions

Chanel Taylor is the CEO and founder of Unsickle My Cells UK (CIC), a community organisation committed to raising awareness on sickle cell and mental health.

Here, she shares her story of the life-changing power exchange transfusions have had on her sickle cell.

I was diagnosed with sickle cell at the age of nine months. As a baby, my nan would look after me and one night my temperature was boiling like a kettle. She called the ambulance and I was rushed to the Queen Mary hospital in Roehampton where I received an emergency blood transfusion. At that point it was a matter of life or death – that blood transfusion saved my life. After I survived the transfusion, the hospital conducted multiple tests to find out I had this rare condition called sickle cell. We’re going back more than 30 years and in the 1980s there wasn’t enough information about sickle cell.

I got older, but was still in and out of hospital and my body was weak and fatigued. I was regularly taking Hydroxy, which is also used as a chemotherapy drug, and battling the side effects that came along with it. I suffered hair loss, dull skin, gum disease, and I still didn’t feel like the treatment was working.

I was also a single parent and I felt weighed down from balancing motherhood with sickle cell. I knew I needed something to change. In 2019, I made the decision to stop my treatment and look into exchange transfusions. I had a conversation with my nurse, and we discussed the pros and cons. I underwent multiple blood tests and my medical records from childhood to adulthood were thoroughly dissected.

Eventually, I was booked for my first exchange transfusion in November 2019 and the process was extremely daunting. I was so nervous and worried about the procedure; my mind was constantly racing. I knew I had extremely small veins, what if they struggled to draw blood from me?

Exchange Transfusions

A red cell exchange is performed using a machine called a Blood Cell Separator which can separate blood into its various parts. The machine separates and removes the patient’s sickle-shaped red cells and replaces them with normal red cells donated by blood donors. The remaining part of the patient’s blood, including white cells and plasma, is returned to the patient unaltered.

By replacing the sickle cells, the oxygen circulation around the body is improved and complications of sickle cell are reduced.

But having that exchange transfusion honestly changed my life. The team were amazing and made me feel really comfortable. I could’ve done a cartwheel afterwards. I had a newfound spring in my step, I was so happy and energised that I had to tell myself to calm down as I knew I couldn’t over-exert myself. As much as you want to do everything at once, you have to rest.

The benefits from the exchange transfusion have significantly enhanced my quality of life. My relationship with my daughter has also really improved: I now have the energy to take her out to after school clubs, social activities and generally spend more time with her. I’m able to instil structure in my life and have a better routine.

I now work for the NHS Blood and Transplant in marketing as an Events and Outreach Officer as my way of giving back to the community. I'm also able to focus on my platform 'Unsickle My Cells' which aims to raise awareness on sickle cell in the black community. I recently received my formal certificate of CIC registration which I'm extremely happy about.

I want to thank all the donors. I receive 7 units every 5 weeks and if it wasn’t for the donors, I wouldn’t be here today. I’m able to be a role model to my child and for that, I’m extremely grateful.

 

Chanel and her daughter Ny'Asia