Blessings from a donor

February 14, 2018

I joined the team of heart warriors at Texas Children’s Hospital at the age of 3, when I was hospitalized for the third time with pneumonia. To my parents’ surprise, my chest X-ray revealed an enlarged heart, a resting heart rate of 180/200 bpm and a diagnosis for restrictive cardiomyopathy, a condition that limits the heart muscle from relaxing, limiting the flow of blood.

I was immediately sent to Texas Children’s to receive the life gift of a heart transplant in May 2000. The first year following my heart transplant was rough as my body fought the new organ and experienced rejection. However, after the first year, the heart gave me the opportunity to play sports, attend school and live a normal childhood. After 11 years, the heart began to fail due to the rejection from the 12 medications I had to take. My heart was growing fistulas, which were stealing blood from the heart and creating low oxygenation throughout my body. We knew this day would come, and the doctors were always honest when they told us the transplant was a Band-Aid, not a cure.

In 2009, I was put back on the transplant list. My mom and I packed our bags, and once again said goodbye to the familiar as we began a journey of waiting, my body struggling to compensate for my poor heart condition. I missed my friends, my family and baseball. It seemed like a lifetime passed by before the call for a new heart came in; it took 18 months. I remained strong and kept fighting, and all of the loving cards and letters I received kept me going. There were days when I wanted to give up, but my mom never lost hope, and she was always there to encourage me.

I received my second life gift in July 2011. This time, my new heart enabled me to graduate from high school, start my college career, swim on a team and overall enjoy my remaining teenage years. Unfortunately, after five years, the heart developed coronary artery disease, a common problem caused by all of the immune suppression drugs needed to keep the heart from going into rejection.

In July 2016, the doctors were honest and told me I needed a third heart, but that only two transplants had ever been done on a single person before. I was scared, but felt as if I would be cheating my family if I didn’t give it my all. I was sicker than I had ever been, but stubbornly determined to live each day to its fullest.

I waited 15 months for a new heart – four of those months were inpatient, where nurses and doctors became my family. Death was right around the corner, and we were prepared for it, when God gave us the perfect heart, my third life gift, on Dec. 18, 2017. Today, I’m working towards graduating with a nursing degree, honoring my donors and living each day as if it were my last.

My journey hasn’t been easy, but it has been full of blessings, hard work and lots of love. This journey has been hardest for my siblings as they watched me struggle at times, fear for the worst and endure separation from the family. However, we’re all stronger and better humans because of what we’ve been through and who’ve we’ve met – the medical staff at Texas Children’s Hospital who prayed for me and strived for nothing but success.

February 14 is National Donor Day, an observance day originally designated to raise awareness for organ, eye, tissue, marrow, platelet and blood donation. Today, nearly 120,000 patients are on the waiting list to receive a lifesaving organ transplant, and countless others are in need of cornea, tissue, bone marrow, blood and platelet donation.

Post by:

Taylor Berry, patient