Written by Wills Porter
of Impact America Media
Advocate Part 1
At the age of twelve, I been 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.
Advocating outside the hospital Emergency room
The first time I had to advocate for myself outside of the hospital was when I went to the emergency room. Unlike non-immunosuppressed people, I was under strict orders from my doctors to not wait in the emergency room waiting room. When I would go to the ER, I would do three things. I would tell the ER receptionist why I was there; provide my ID and then tell them I needed a separate room due to my immunosuppressed status. I found all I needed to say was “I am an organ transplant recipient and I need to either wait in an available room or wait outside until I am called back”.
Primary Care Physician
While it was important, I advocate for myself at clinic, it was also important I advocate for myself when I sought outpatient care. Unlike my pediatric primary care experience, my adult primary care experience was extremely eye opening. In my first session, I gave a full and exhaustive rendition of my medical history. This was especially difficult given that I was one of the few transplant recipients in the practice. For the first time in my life, I felt like I was the expert on my health. Despite being frustrated at how much detail I had to provide; I felt a sense of empowerment in that I not only knew my medical history but could adequately express what I knew to a medical professional (not accustomed to seeing transplant patients).
While this first session went well, I quickly became awestruck at just how lack luster my care was. Thankfully, at that time I only needed a primary care physician to call in medications. What I did not realize was just how bad my care was. This all came to a head a few years ago when my insurance told me they would not cover a medication I had taken since I was seven. Thankfully, the generic medication I was encouraged to take was made by the same manufacturer and appeared to be a good and cheaper alternative. Within a few weeks, I was able to get my primary care physician to make the change. Then everything changed. What first started as uncharacteristic blood pressure readings and irregular heartbeat patterns turned into a major medical challenge. Within a few months of being on the medication, my skin was peeling off of my hands and I experienced extreme social anxiety. Thinking nothing of the situation, I assumed that it was just part of the adjustment process. I just thought “give it a few weeks”. Boy was I wrong. A week after my skin started peeling off of my hands my entire attitude changed. I started saying things that I did not realize I was saying, and I was a completely different person.
When I went to my primary care physician to explain why I needed to go back on the original name brand medication, I was baffled at their response. Instead of showing concern and help me, they encouraged me to stick it out and then said under their breath that they would only write a few sentences to the insurance company on my behalf. It was in this moment I knew I was alone. The insurance company did not care, my primary care physician obviously showed no regard or concern either. It was all on me. After that appointment, I walked out of the office knowing I would never return. Two years since that event occurred, I have been dogmatic in advocating for myself and it has paid off. Looking back, the CHOA teen transplant program helped prepare me to advocate for myself when it mattered most.
Podcast Interview with Alex Berrios Jr.