Blood Like Glass, Heart Like Iron: My Triple-Diagnosis Journey

 

Blood Like Glass, Heart Like Iron: My Triple-Diagnosis Journey

Eleven years ago today, my world shifted. It was the day I learned that my son and I shared more than just a last name and a stubborn streak—we shared a rare genetic blood disorder called Hereditary Elliptocytosis (HE).

What is HE?

For most people, red blood cells are shaped like flexible discs. For us, they are shaped like ovals or cigars.

  • The Good News: For many, it’s a silent passenger that causes little to no trouble.

  • The Reality: For about 5–20% of us, those odd-shaped cells break down (hemolysis), leading to things like jaundice, gallstones, and an enlarged spleen.

My son has a mild case; he sees his hematologist once a year, and we are so grateful for that. But my journey has been a bit more... complicated.

The Battle of the Spleen

I remember February 27, 2015, vividly. My spleen had enlarged to 15cm. My hematologist discussed removing it, but at that time, the risks were simply too high. That was the turning point. What started as blood transfusions every 6–8 months has since become a ritual I face every 8–12 weeks.

When One Becomes Three

If HE was the "original" passenger, the last few years have brought some uninvited guests:

  1. Hereditary Elliptocytosis (HE): The foundation of my journey.

  2. Iron Deficiency Anemia w/ Chronic Blood Loss: Diagnosed in June 2022 following a major back surgery.

  3. Hemolytic Anemia: My newest challenge, where my body destroys red blood cells faster than it can make them.

People often ask how I handle it. I tell them I have "blood like glass"—delicate, sharp, and constantly needing care.

Why I Keep Moving

Between the hematologist visits and the transfusions, it would be easy to slow down. But I have the stubborn strength of my grandmother flowing through my veins, fueled by the fire of being an Aries. I don't just "deal" with these disorders; I move through them.

Eleven years later, I’m still here, still fighting, and still moving forward for myself and for my son. We may have rare blood, but we have an even rarer resolve.

A Note to My Readers: To those of you fighting invisible battles—whether your "glass" is your health, your heart, or your mind—keep moving. The shape of your cells doesn't define the shape of your life.

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