Blood transfusions bought the doctors time to solve my aHUS riddle

My red blood cells were being destroyed faster than they could be replaced

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by Shalana Jordan |

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The first thing that comes to mind when I hear someone needs a blood transfusion is that they’ve had a car accident or surgery that’s caused them to lose a large amount of blood. I needed a blood transfusion after my first cesarean section delivery after complications from a placenta previa. I never imagined, though, that years later I’d need 18 blood transfusions — and live to tell the tale.

In September 2020, I was hospitalized for nearly two months with multiorgan failure. I nearly died and, along with blood transfusions, endured myriad lifesaving procedures, including plasmapheresis, dialysis, immunizations, and chemotherapy. COVID-19 had activated a dormant thrombomodulin gene mutation, which caused me to develop atypical hemolytic uremic syndrome (aHUS).

One of the worst symptoms of aHUS is hemolytic anemia, which happens when red blood cells are destroyed faster than they can be replaced. Of course, neither I nor my doctors had any idea what I had when I first went to the emergency room. My platelets and red cell count continued to drop daily. I was covered in huge black and purple bruises and was exhausted and weaker than I’d ever been. Multiple times a day, the phlebotomist would struggle to draw my dark, thick blood to test.

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A blood transfusion was a must for me

I needed blood transfusions to replace the blood cells I was losing. They would help stop the clock while the doctors worked to figure out what was wrong with me.

The human body typically holds 10 units of blood, around 1.5 gallons. I received 18 blood transfusions in my first five weeks in the hospital, getting nearly double that amount.

I didn’t have a choice; getting a blood transfusion was a must. If I refused, my only option was to die.

Of course, I had no idea what a production it’d turn out to be. Each time the nurse came in to get me ready, she would apologize for interrupting, then start a long, hesitating speech about the risks of HIV and more. I’d have to sign a waiver.

It’s not like any of this talk mattered to me. So by the time I’d heard “the speech” for the fourth time, I just shushed the nurses and waved them into the room to do their thing.

A doctor was once in my room discussing my day’s lab work when my favorite head nurse knocked on the door. She was blond and bubbly, with a thick Southern accent, and we always gossiped late at night over orange sherbet. She had an IV bag of blood with her, along with the usual waiver. I stopped her before she could mention it and signaled for the pen.

“I know the drill. Hook me up,” I said.

She giggled and the doctor looked at me with a raised eyebrow, appearing surprised about my reaction to a transfusion. But it was what it was. I had to have it.

Blood transfusions undoubtedly played a huge role in saving my life. I still need them from time to time because, with aHUS, I’ll always have to deal with anemia. I’m grateful to the blood donors around the world who help make transfusions happen.

Note: aHUS 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 aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.


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