Embracing Life†

Abstract

I had never felt more alive and inspired as I did the beautiful morning of January 1, 2011 when the Donate Life float made a right-hand turn onto Colorado Boulevard in Pasadena, Calif., for the 2011 Rose Parade. As I waived to the 51.9 million Americans watching on TV, millions of international viewers in 220 territories around the world, and the more than 700,000 people lining the streets, I was loving life and was so grateful to have the opportunity to show the country that organ donation is vital, that transplantation works, and the resilience and beauty of life. I was encouraging organ and tissue donation! I felt free, invincible and didn't have a care in the world.

I haven't had many moments in life like this—where I didn't have a care in the world. I feel as if I have an old soul and definitely had to grow up faster than most. My earliest memory as a little girl is from the age of five, when I had my first grand mal seizure. At ten years old, I had sky-high blood pressure of 160/140 and was diagnosed with one of the most common lifethreatening genetic diseases, polycystic kidney disease (PKD). I missed the first half of my eighth grade year because of scoliosis surgery: two Harrington rods were placed on either side of my spine. I battled cyst bleeds and onand-off hospital stays throughout high school. Two months into college, I had the worst cyst bleeding ever, which put me in the hospital for 11 months. During this time, the difficult decision was made to remove both of my kidneys (at 19 years old), and I was put on daily dialysis. In addition to all of this, I had a six-month bout of pancreatitis, more than 70 blood transfusions, 40 inches of scars, and emergency stomach surgery for a bleeding vessel and four bleeding ulcers. There was a point where my family was called down to Johns Hopkins because the doctors did not think I would make it through the next emergency surgery.

If only we knew how beautiful and rewarding my life would be. I pulled through that emergency surgery and my body held on for the next few months until I received just what I needed to survive, the gift of life from a dear family friend, Sally Robertson.

All of my health challenges and my transplant taught me that our bodies are stronger than we sometimes give them credit for, that when one embraces the journey one can surpass the boundaries of mind, body, and spirit, and that transplantation does not limit us; instead, it lets us live the most rewarding life possible.

Transplantation has a life-changing, domino effect on so many people, aside from the recipient. I love my transplanted kidney because it has given me life and the opportunity to help others improve their lives. In 2008, my award-winning biography, titled “My Favorite American,” was published. It's opened doors and enabled me to help educate the world about PKD and organ transplantation.

After my transplant, I developed a passion to raise awareness of PKD and organ donation. In 2004, I founded the South Central Pennsylvania Chapter of the PKD Foundation. In addition to working full time, I held monthly meetings, organized annual fundraising walks and educational seminars, spoke at PKD conventions, raised funds to support PKD research, and helped raise awareness on the local, state, and federal levels. I've shared my message of hope at more than 70 events and with more than 5,000 people across North America.

This new lease on life has fueled me to live every day with purpose: to make my parents proud, and my donor proud of the decision she made to donate her kidney to me. I hope my positive story of transplantation encourages other transplant recipients to embrace their transplant, because it shows how much one can accomplish after a transplant and encourages everyone to be organ donors. I believe with all my heart I was given this gift and I am still alive today to share with the world my story and the lessons this gift has taught me.

In 2010, my fiancé and I embarked on a cross-country adventure by moving from Pennsylvania to California. For me, this move is a powerful statement that one can live a fulfilling life after transplant, and with an incurable disease like PKD.

I feel as though all the difficult days my family and I have had to endure due to my health issues are one by one being erased and replaced with beautiful life-changing moments, like the lives I have touched through my volunteer efforts and most recently, thanks to Astellas, being selected as a winner of their “Ride of a Lifetime” contest. The friendships I made and the experience as a whole will be something I will always treasure. It is overwhelming what joy can come from pain when one embraces life.