Advocate Part 1
Updated: Apr 13
At the age of twelve, I bean one of the greatest experiences of my life. At the time, I did not realize it, but looking back, the teen clinic experience at Children’s Healthcare of Atlanta was truly incredible. The goal of the transplant teen clinic program at CHOA was to help teens become knowledgeable about their own specific medical situation and take responsibility for their own health. In short, the transplant teen clinic goal was to help each patient become their own advocate.
The Teen Program and What I Learned:
In my first teen clinic I learned the basics of understanding my lab results. I also learned more about the specific medications I took and how to practice healthy medication adherence habits (such as taking my medications at the right time). When I left the first session, I was so excited to learn more about my medical situation. Between the time of my first and second session, I researched and learned more about my specific medical situation. I also attended the CHOA transplant teen camp. At this camp, I was able to see my camp friends and learn things that regular clinic did not have time to teach. For example, we learned about the importance of nutrition. Most importantly, we learned the importance of developing healthy eating habits and avoiding foods that interacted with my medications. Just after two years in the teen program I was able to explain my entire medical history to my doctors. By the time I aged out of pediatric care at 18, I was prepared to take the next step in my post-transplant care journey.
Feeling Terrified and the Realization:
I remember the final teen clinic appointment vividly. Every one of my doctors was happy to see me age out and celebrated my accomplishments. I on the other hand was terrified. I did not want to leave CHOA and was afraid of the transition from pediatric care to adult care. What if the doctors are terrible? What if I had to get a biopsy, I didn’t want a biopsy? Why were my parents not understanding my fears? I had never done this before. I was terrified to leave CHOA and was convinced that I was going into the unknown completely unprepared. I remember breaking down in front of my doctors and then in front of my dad on the drive home from the hospital. What I did not realize was how prepared I really was.
When I went to my first appointment at Emory, I was still terrified. However, after meeting my main doctor, all of my fears vanished. My doctor was incredible. When he asked me about my medical history, I gave him a full rendition of my medical history without even thinking about what to say. In that moment, I realized that I was not only ready for the transition to adult care, but I had become my own best advocate.
To listen to the podcast interview about being an advocate see the below link