Healthcare Transition from the AYASHCN’s Perspective

Abstract

The Concept of Health-Care Transition (HCT)

As a now middle-aged adult with a lifetime of special health-care needs, it is a privilege to reflect back on the pivotal years when I grew up and left home to attend college. I was a 90 pound 18-year-old who had been in the hospital for over 36 weeks of my life. Born in 1972 with cystic fibrosis (CF), my parents were told I would be lucky to live to the age of 10. My twin sister, Anabel, who also had CF, and I were required to do daily respiratory treatments, which consumed 3–5 h daily. We learned at an early age to take gradual control of our medical care and help each other with chest physical therapy. This dependency allows us to attend college, graduate school, and even live abroad. We fell in love with two special men who wanted to help us with our treatments. Ana received a double-lung transplant at the age of 28. I received a double-lung transplant when I was 32.

In this chapter, I will discuss the challenges and opportunities that my family and I faced while transitioning to adulthood. I will also incorporate a professional perspective as a social worker. My hope is that much of my story will be generalizable to other health conditions.