Recovery
As with many transplant patients, recovery was the hardest part of my journey, especially as a
12-year-old on the cusp of becoming a teenager. I was on numerous medications, including
prednisone, cyclosporine, Lasix, Nystatin (swish and swallow), Cellcept, Bactrim, and many
more. These medications caused severe side effects, such as rapid weight gain, fluid retention,
thrush in my mouth and throat, high blood pressure, and even the risk of lymphoma (post
transplant lymphoproliferative disorder). I hated how these medications altered my physical
appearance, but I also understood they were essential to keeping me alive and preventing
rejection of my new heart.
I also had to cope with a painful and sensitive revision scar that made even laughing and
sneezing hurt at times. To manage the discomfort, I used a heart pillow provided by the hospital,
which became a special keepsake. Nurses, WCPO 9 News crews, and friends signed it, making it
even more meaningful. However, my parents had to take many of the stuffed animals and
plushies I received back home because there were simply too many to keep.
During this time, I had frequent clinic visits, blood draws, and biopsies to monitor for rejection
and complications. Initially, these appointments were weekly, then biweekly, and eventually
monthly as my condition stabilized. There were times when, after a biopsy, my pressures, cardiac
function, and oxygen saturation levels would drop, indicating signs
of rejection. In those cases, my doctors would quickly admit me to the hospital and administer high doses of prednisone to treat the rejection. I always dreaded this process, as the side effects of fluid retention and rapid weight gain made me even bigger. It was incredibly frustrating!
I spent two and a half months in Cincinnati at the Ronald McDonald House, staying in the isolation wing so the heart transplant team could closely monitor me for any complications. The first year after a heart transplant is the most critical, with the highest risk of rejection and
infection. I had to remain in isolation, which meant I couldn’t go out in public or have visitors aside from family. To break the monotony, my mom and dad often drove me around Cincinnati to explore the city. These drives became my only way to experience the outside world. We visited beautiful parks like Eden Park, Ault Park, and Alms Park, though I always had to wear a mask to
protect myself from spores and other potential exposures.
Learning to exercise again was another hurdle. It took time for my body to adjust and heal after the transplant. Exercising had always been a struggle for me, but I gradually got used to it. To pass the time, I also did artwork, played games like Bingo and Bubble Safari on my iPad,
watched Disney Channel, and completed an hour of schoolwork each day with a teacher at the Ronald McDonald House.
When I finally returned home, I stayed indoors and avoided going out. Being home brought immense joy, especially because I missed my dog, Lucy Lu, terribly while I was away. Whenever I FaceTimed my dad from the hospital, I always asked him to show Lucy (Puppo) on camera. At
home, I spent my days doing puzzles, particularly ones by my favorite artist, Kevin Whitlark, whose whimsical One Hundred and One series I adored. The medications left me feeling exhausted, so I took frequent naps to let my body rest and heal. That year felt agonizingly slow,
and I often doubted I’d ever reach my one-year heart transplant anniversary.
Over time, school became much easier. While I still struggled with math, my reading comprehension, speech, and spelling improved significantly. I used to dislike books, but reading eventually became one of my favorite ways to spend my free time. I continued to work with an Intervention Specialist and remain in the IEP program throughout my entire school journey, even into college. The reason was that I missed a lot of school for heart checkups, and the IEP provided the support I needed to stay on track and catch up on my schoolwork.
