By: Mary H. Wu
One of the biggest challenges I encountered after I received my second kidney transplant at 12-years-old was complying with taking my fistfuls of color-coded immunosuppresant medications. The word “compliance” does not even exist in the teenage language or thought process and so I naturally depended upon my family, particularly my tough-love auntie, who made sure I took my medications. She lined my twisted-topped medications by height like proud soldiers that entered my body two times a day with one mission only: protect this precious gift of life, my kidney transplant, from rejection and failure. My auntie was the captain of these soldiers, handling the weekly plastic pillbox and a powder-blue pill cutter to samurai those horse pills in half. Her eyes were always on me to ensure that I was ingesting every single pill. I was the ocean that went with the flow with whatever I was told.
As the days went on post-transplant recovery, there came a point that I just did not want to take my medications anymore. I felt like a helpless drug addict. I found these medications repetitive, annoying, stupid, and pointless. I wondered when the madness with the medications would end, and soon learned that these medications were a lifetime deal. That realization along with problematic side effects from the medications caused angry thoughts to seep into my brain:
- “Why Me? I just want to be a normal teenager that belongs and fits in and not be some different freak.”
- “When can I stop taking medications or at least decrease the dosage?”
- “What is the point of taking all these medications when all these other health problems occur?”
I was incredibly fortunate for my loving and outstanding support system, but all this support paled in comparison to the bumpy and difficult emotional process of regularly taking and remembering to take my medications. I often pouted or sulked when my family reminded me that it was time to take my medications and how the benefits outweighed the extreme loss of possibly losing my new gift of life. I was depressed when I saw my aunt refill my medications on a Sunday for the upcoming week.
About a month or so post-transplant, I heard my aunt say the name and purpose of my medications aloud as she refilled my pillbox and referred to the chart of all the medications I had to take. She was usually quiet during the pill process. But, there she was saying them aloud, slowly and methodically: “Prednisone. Prograf. Cellcept.” The names were foreign to my ears. My family then began to encourage me to say the names of the medications aloud. I paused at the suggestion, but curiosity was greater than my teenage angst. I began to say the medication names aloud and feel their letters and syllables in my mouth. In the next couple of weeks after this name game ensued, I slowly recognized the rhythmic sound that the pills made in their bottles when I shook them as well as the colors and textures of the immunosuppressant medications in the process of taking them. My entire family nodded encouragingly and enthusiastically when I named the medication with my eyes closed just by hearing the sound a particular medication made in the bottle. I had no clue what was happening, but it was suddenly like a game. It was suddenly intriguing. It was suddenly fun.
In the following weeks, I learned about my most important medications and especially their side effects:
- Cellcept: a beautiful baby blue and peach-colored capsule that caused me to wake up and walk in the middle of the night because of tingling and sharp sensations in my legs
- Cyclosporine: a mellow yellow and liquidated medication that I downed like a shot glass and that caused facial hair
- Prednisone: a round and innocent-looking white little pill that maintained top notch kidney function, but caused a string of side effects that included moodiness, voracious hunger pangs, massive weight gain, horrific acne, and chronic and ongoing hip and lower back arthritic pain
I don’t know when it eventually dawned on me that I had somehow started to take control of my health, body, and life, but I am sure that it was when I learned all about my medications and their purposes of saving my kidneys rather than only their side effects. I had become the captain of these soldiers and no longer the ocean. In order to be in control, I had taken control. I had become the proactive patient, and learned that I was much happier to steer and be in control.
The combination of hormones, puberty, and the truly life-altering event of the kidney transplant was a lot to manage while trying to be an average teenager. However, growing up taught me that the lifetime deal of taking immunosuppressant medications, even with all the crazy side effects, are a small price to pay for the life that I have thanks to my life-saving kidney transplant. When I finally learned and accepted responsibility for my own health, I complied with taking these medications. A patient has the power to choose responsibility for managing their own health, body, and life. We are not always given choices of what happens in our lives, but we do have the power and choice of how to handle what life throws our way.
About the Writer:
Mary H. Wu is a two-time kidney transplant recipient who was diagnosed with chronic kidney failure at 3-years-old, receiving her first transplant at age 6 and second transplant at age 12, which has lasted for almost 17 years. She is an active member of the organ donation and transplant community, volunteering the National Kidney Foundation, New York Organ Donor Network, Transplant Support Organization, and Transplant Recipients International Organization. She is a passionate advocate, reaching out to the public, fellow transplant recipients/candidates, and caregivers through ongoing public speaking engagements, contact with politicians, and her writings about the power of organ donation and transplantation. She is in the process of publishing her book Confessions of a Kidney Transplant Recipient (http://kidneyconfessions.blogspot.com) and can be reached at firstname.lastname@example.org.