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How Heterotaxy Syndrome Made Me, Me
"Heterotaxia is a rare birth defect that involves the heart and other organs. The prefix of the word (Hetero-) means "different" and the suffix (-taxy) means "arrangement." There are different forms of Heterotaxy Syndrome. All usually involve heart defects of varying types and severity." (Children's Hospital of Philadelphia)
Heterotaxy is typically diagnosed in utero, is life-long and life-threatening. In my case, I was diagnosed in utero, and it continues to affect my life daily. I have a left solitary kidney that teeters between stages 2 and 3 Chronic Kidney Disease and is declining, malrotation of the small intestines, stage 2 liver fibrosis, PTSD, mood disorders, anxiety disorders, chronic depression, chronic migraines, fibromyalgia, asplenia, and 14 total heart defects one being that I am dextrocardiac, meaning that my heart is on the opposite side of my chest. Every 6 weeks maximum I get bloodwork done; I am seeing ten specialists as of this year. Due to doctors appointments and testing, I do not have perfect attendance, yet my current GPA is 3.2, core GPA as well. While math is my toughest subject, the National Math Hotline is saved into my contacts.
Heterotaxy has challenged me in ways my peers havent been, I am on 12 medications a day, and I have completed a total of 4 years of therapy in only 5 years to help me cope with my chronic depression and other mental health issues. When thinking about the future I must take years of college required to standing time into account as I frankly don't know how long I have. Computer Technical work has proven to be tha passion that I can chase while still taking into consideration my chronic, progressive, health conditions. Taking Computer Programming has shown me that I can have a career in an exponentially-growing field while still supporting myself and family. While not being physically intensive, majoring in technical support I highly needed as the ever-growing field will only need more experts as time goes on. Heterotaxy may affect just about every anatomical system within my body, but it has not stopped me from chasing my dreams; mentally or physically.
Heterotaxy broken down means different arrangment, it rearranges the organs with the body randomly. It has made me open-minded to many different career choices that I may want to pursue, ensuring the one that i do follw will be the best for me. Heterotaxy may have changed a lot of things in my life, but it has not changed who I am, it has made me who I am.
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This article has 3 comments.
I am 17 years old and I have Heterotaxy Syndrome, I constantly have doctors appointments, and i have many health issues from the extensive trauma in experienced.