The Feisty Fontan

When I first thought about starting a blog, my only real goal was for another heart patient, or anyone else with a chronic illness, to find something relatable in my story. I was so excited when one of my first blog posts, “But You Don’t Look Sick” was shared by a fellow Fontan patient with the sentiment that my words helped explain some thing he felt.

Another goal of mine was to get an article published on The Mighty, a resource and community website for people with chronic illnesses.  And today that goal was accomplished! My first article as a Mighty contributor, “The Connection Between My Congenital Heart Defect and Tummy Troubles,” about my recent Protein Losing Enteropathy (PLE) diagnosis, went live today.

While PLE is a known complication of the Fontan surgery, I believe that my previous doctor’s lack of knowledge, as well as my own lack of awareness, led to about two years of my PLE not being diagnosed and therefore, not being treated. I wanted to share this part of my story with a larger audience in the hope that creating awareness may help even one other Fontan patient learn about PLE, its symptoms and how talking about poop with their cardiologist might save themselves years of misery.