Taking Joy in the Journey Part 3: The Challenges of The Journey
A Challenge from the Start:
When I woke up after surgery, I had a new life and a new millennium had begun. While I had gotten my second chance at life, I had a long way to go in recovery. Before I could even start the recovery process, I ran into a challenge. My new liver was not working well. In fact, my doctors put a sterile gauze over m incision site because they planed on doing an emergency transplant. What happened within the next 24 hours no doctor can explain. My liver went from not working to working. After leaving the hospital, my doctors said that I may have a new liver but being immunosuppressed would present challenges in fighting off diseases. Over the years, this has definitely proven to be true. Whether it be Mono, Pneumonia, the Flu or Strep Throat, it often takes me more time to fight off diseases. In elementary school this was a challenge and I ended up being put on hospital homebound.
Beyond this challenge, I also had a lot of rehabilitation to go through to overcome the neurological damage that had occurred before my transplant. I remember being in therapy and having to learn how to draw a circle on a piece of cardboard paper. I also had to learn how to cut the circle. Learning this process took two years. The first year was spent learning how to hold the marker and drawing the circle. The next year was spent learning how to hold the scissors and cutting the circle. This was extremely challenging, but I was able to succeed because of the unrelenting dedication on the part of my occupational therapist and my parents.
Another challenge of my transplant journey has been in learning whose input and opinions matter. Unfortunately, there have been many who have chosen to look at my past challenges and draw conclusions on what I will be able to accomplish in my life. In school, I had to work hard to overcome some learning challenges, but I never gave up. In the midst of my formative education, some chose to not speak life but criticize and opine on my future potential. For a large part of elementary school, I chose to listen to these voices. I was not the best and my peers had no problem making it known. By fifth grade, I had a choice, listen to the lies or to the voice of truth.
When I started high school, I had to take the most boring test I have ever taken in my life. This test was given to “help” me know how prepared I was for college. Needles to say, I things didn’t go as I hoped. After I got my test results, I asked my academic counselor what the numbers meant. In response they said that they didn’t want to say it was an absolute but that I should “probably consider an alternative to college”. In rage, I got home and ranted to my patents about how much of a failure I was. I was angry because I was just not good enough. At least that is what I thought. In reality I had made major strides academically and was preforming at a level no doctor or even my parents once thought was possible.
After talking with my parents, I learned the truth of what actually happened durring my cardiac arrest and seizure. I saw the tests and how I had consistently improved over the years. The day after that conversation with my parents I was called into the student success center at my school. At first, I did not know why I was there. Then the main person overseeing the center told me that they believed that my test results on the standardized test I had recently taken did not accurately reflect my abilities. This conversation was like a revelation redirecting my dreams. I wasn’t a bad student. My academic advisor had just decided to focus on what I couldn’t’ do rather than what I could do. I went on to graduate on time and with an incredible GPA. Since then, I have gone on to graduate with honors from the University of North Georgia and the University of Georgia. I am almost done with my Masters of Social Work and I am on track to graduate with honors. How is this possible? The tests said I wasn’t good enough. The advisor said I may need to consider an alternative to college. The doubters said get back in line and wait your turn. Well… I don’t think so. I will not listen to people whose opinions of me don’t matter. You should not do this either. All my life I have been told by some to wait in line. Now, I am on a mission to create the line others leave to join.
Beyond the challenges early on with my organ graft and my school challenges, I have also faced challenges in learning about insurance. Thankfully, this challenge was short lived thanks to my incredible transplant team at Children’s Healthcare of Atlanta. Thanks to my transplant team, I was able to learn the difference between prescriptions and hat insurance would and would not cover. By the time I was in high school, I was approached by my transplant team and asked if I wanted to switch my medication to the generic prescription. While this would have been more cost effective, I chose to not make this change. I was about to go on a trip of a lifetime to Philmont Scout Ranch and I wasn’t about to miss that! I also did not want to change because I had been on the same medication for over 10 years. Tome my view was “if my liver is happy, don’t mess with it”. I ended up not making the change and I am thankful for it. Sure I could have saved some money but I was already part of a program that helped with medication cost assistance. Even today, it is important that I be aware of what insurance will and will not cover. With everchanging healthcare polices, this can sometimes be quite challenging.
The above are just a few examples of the challenges I have faced durring my transplant journey. In my next post, I will discuss some of the many joys of the transplant journey. That post will have to wait until another day.
These are just a few examples of the challenges I have faced along my transplant journey. Maybe you have experienced these or similar challenges. Regardless of the challenges you have experienced, know you are not alone. If you want help overcoming the challenges of the transplant journey, I would encourage you to reach out to a patient organization in your state. Or maybe you know a friend who you can talk to. Whatever you do, get involved because the transplant journey is much easier in the community of others.