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When the Liver Affects the Mind: Raegan’s Fight Against Hepatic Encephalopathy

🧠 What Is Hepatic Encephalopathy?

Hepatic encephalopathy (HE) is a form of brain dysfunction caused by liver failure. When the liver can’t filter toxins like ammonia from the blood, those toxins build up and begin to affect the brain — leading to confusion, memory loss, personality changes, and in severe cases, coma.

HE is graded from Stage 0 to Stage 4:

  • Stage 0–1 (Covert HE): Subtle memory issues, sleep disturbances, mood swings

  • Stage 2–4 (Overt HE): Disorientation, slurred speech, tremors, confusion, and eventually unconsciousness

For Raegan, these symptoms aren’t abstract — they show up in her daily life in ways that are both subtle and alarming.

We’ve seen her:

  • Spacing out, staring off into space for long moments

  • Falling asleep unusually quickly and being harder to wake up

  • Repeating phrases of a sentence over and over

  • Taking longer to process information than normal

  • Struggling to focus on tasks or conversations

  • Experiencing tremors in her hands

  • Forgetting things she normally remembers with ease

These moments remind us that hepatic encephalopathy is not just a medical term — it’s a lived reality that affects Raegan’s ability to learn, play, and interact with the world around her.



💜 Why It Matters for Raegan

Raegan’s cirrhosis is not alcohol-related — it’s a complication of sickle cell anemia. Her liver has been damaged by repeated episodes of blocked blood flow and inflammation. This scarring (cirrhosis) reduces her liver’s ability to filter toxins, putting her at high risk for hepatic encephalopathy.

Thanks to early intervention, Raegan is currently taking medication to prevent HE. Her care team uses a combination of:

  • Lactulose, a synthetic laxative that helps remove ammonia from the gut

  • Rifaximin, an antibiotic that reduces ammonia-producing bacteria

  • Careful monitoring of her diet, hydration, and infection risk



🩺 What Caregivers Should Know

HE can be triggered by stressors like infection, dehydration, or bleeding — all of which Raegan is vulnerable to due to her sickle cell and liver complications. That’s why her care plan includes:

  • Daily medication adherence

  • Close monitoring for signs of confusion or sleep changes

  • Preventive care to avoid infections and GI bleeding



💬 Living With the Risk

For families like ours, hepatic encephalopathy is a quiet threat. It doesn’t always show up with dramatic symptoms — sometimes it’s just a shift in mood, a forgetful moment, or a sleepy afternoon. But we stay vigilant, because we know how quickly it can escalate.


Raegan’s strength, and the support of her community, help us stay ahead of this complication. Every donation, every share, every prayer helps us keep her safe — and helps raise awareness for other families navigating sickle cell hepatopathy.


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