TRIO Youth Circle: Our Stories
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Read our stories of hope and inspiration, and if you are willing, write us with your own story to add here . . .
(e-mail your story for consideration to: info@trioweb.org and put "Youth Story" in the subject line)
A STORY OF HOPE…A LIFE OF TRIUMPH
Most of the memories of my youth revolve around the debilitating health issues that I faced. While I conquered them, they still remain defining moments in my life. My earliest memory is one particular morning when I was five years old. I walked into the kitchen to give my Mom a hug and a kiss and to sit down to eat breakfast together. Instead of wishing my Mom a cheerful “Good Morning”, which I had intended, my first words were: “Mommy, my head hurts.” I repeated my anguished cry several times, each time louder and louder: “Mommy, my head hurts!” Within moments, I fell to the ground and experienced my first grand mal seizure. They would continue, periodically, for the next eight years. I was 13-years-old when I grew out of them.
The next defining moment of my youth occurred at the age of 10, following a check-up at my pediatrician’s office. My blood pressure was an astounding 160/140. Instinctively, my mother knew that high blood pressure is a side effect of the hereditary disease that was passed down to her from her mom. It is called polycystic kidney disease (PKD). I was given an ultrasound and it was discovered that my kidneys were polluted with cysts! I vividly remember the car ride home. My Dad was driving and my Mom was sitting in the back seat with me, crying. I wasn’t sure why she was so upset. I was too young to understand that I had just been diagnosed with PKD, one of the most common life threatening genetic diseases which affects 600,000 American and 12.5 million people worldwide.
In grade school, children just want to fit in with their peers and be “normal.” No matter how hard I tried to be accepted by my classmates, I was always considered “different.” While in 8th Grade, my doctor diagnosed a severe s-shaped curvature in my back that was pushing into my lungs. I had a 67-degree curvature. It would kill me unless immediate surgery was performed. Thankfully, the surgery was successful but I missed half of my 8th Grade school year. Today, my spine is only a 16-degree curve.
I missed out on a lot of my youth because I had to deal with these challenging issues. But I had no idea this was only the beginning and that life would become even more demanding. I would soon be put to the test even more when I entered college. I graduated high school in 2001 and immediately began college. Less than two months later, I became severely ill due to PKD. I had horrible cyst bleeds that put me in the hospital where I remained for nearly eleven months. I was 19 when I went in and 20 when I came out. During this time, both of my kidneys were removed; I was on daily dialysis; I developed pancreatitis; I experienced a congenital anomaly (a bleeding vessel in my stomach); I underwent over 70 blood transfusions; and I had a successful, life-saving, kidney transplant on August 13, 2002. Today, at age 27, the only visible sign of my pain and suffering is in the form of 40 inches of scars that criss-cross my body.
I have learned so much about life and living because I endured so much at such a young age. For starters, it's true when they say: "What doesn't kill you, makes you stronger." I have become a stronger, more compassionate, and better person because of my illnesses. And it is due to my suffering that I have developed a sincere appreciation of life and an understanding and recognition of what really matters.
I am alive today thanks to my kidney donor, Sally Robertson. She has given me a second chance at life and I live each day with purpose and to make her and my two amazing parents proud. The love I have for my parents, Pam and Bill, is immeasurable. Their love, dedication and devotion as parents are why I was able to remain strong in the fight of my life. I knew I was loved.
In 2004 I founded the South Central PA Chapter of the PKD Foundation, and since then have been committed to this amazing organization by holding positions such as Chapter and Walk Coordinator from 2004-2007, and planning our upcoming 2010 Renal Education Seminar. What we get in return by giving is amazing. Being able to make an impact and change people’s lives is far better than anything else I have experienced.
I am honored to have the opportunity to be on the National Board of Directors for TRIO and be able to reach out and help youth. It is important for youth to have a strong support system and know that they are not alone. I hope our TRIO Youth Circle Group will unite youth transplant recipients and families to provide a positive and inspirational environment for us to share our thoughts, grow, and learn from each other.
What do you consider a good day? For me, a good day is when I wake up in the morning and I am healthy and I don’t have to spend the day in a hospital. It is my hope that after reading my story people will become inspired to live even more positively, or reach out and volunteer, or say yes when asked to be an organ donor, and to enjoy the simple things in life.
Never lose hope!
And now, what is your story?
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