Live my life
Experience what I've experienced
Walk my journey
Be me for even one day
Then, you will begin to understand why I am the way that I am.
My whole life has been revolved around the precious fist-sized kidney beans that pack a punch. For many years and particularly in my awkward teenage times, I was quite self-centered, bitter, and believed that I had the worst problems of the world. All I wanted was to be "normal," belong, and move past and forget anything and everything with kidneys.
After receiving my second kidney transplant, I did not realize or truly appreciate the magnitude of this gift of life and living of a kidney bean from my deceased donor and her parents who said "YES" to kidney transplant donation. I had every intention of moving on with my life by purposefully hiding my health and kidney circumstances, particularly when I began to work to avoid any stigma that I was a problematic employee that could be a liability to the company with requiring and needing medical benefits and coverage. I was so self-conscious and caught up in me that I failed to welcome and embrace the "good" reality and the great and giving people in my life (family, friends, and the transplant community that waited for me) as well as reveal and come to terms with the real me and all that had happened in my life.
But, then, I slowly realized that I was not alone and there was a whole community of transplant recipients and candidates from a timid involvement in 2006 with the National Kidney Foundation as a TransAction Council Member to collaborate with others to make a positive difference in the care and services to the kidney community.
Then, my whole life was changed in 2010 that solidified my role as an organ donation and transplant advocate.
The Transplant Games in Madison, Wisconsin
In 2010, I attended the Transplant Games as a spectator and my life was forever transformed from connecting with other proactive organ donation and transplant recipients and especially living donors and organ donor families. Seeing so many transplant recipients actively participating as athletes to showcase appreciation and productivity after a successful transplant made me understand that it was not about me, but all of us coming together to share our stories and make a difference to promote transplantation and life.
CLICK HERE to learn the personal and in-depth published story in the local newspaper, about the Transplant Games and the real beginning of my journey as an organ donation and transplant advocate in "The Journal News."
Due to chronic kidney issues, I have dealt with arthritis nearly my whole life as well-- specifically of my left hip.
At 10-years-old, I began to limp and develop pain in my left hip and lower back. I was told that I would eventually need a total left hip replacement because the left hip joint was "dying"/breaking down, resulting in my right leg shorter than my left leg. However, I was also told to wait and essentially had to deal with the pains and pangs because hip replacements did not last forever and a revision hip replacement surgery could pose even more problems in recovery. Additionally, there was nearly no medication that could alleviate the pains in fear of conflicting with my lifetime immunosuppressant medications. Since 18-years-old and even now, I have muscle spasms that have left me bed-bound, in emergency rooms, and so immensely drained in every imaginable aspect. I eventually sought out osteopathy, ointments, swimming, gentle exercises/stretching, etc. to deal with the pains.
In 2012, my arthritis of constant aches and pains in my left hip and lower back became the forefront of my life, and made me question my quality of life on a daily basis. The pains were so bad that I could walk for maybe only 20 minutes or so. My body and I felt aged.
After going through my usual "pity parties," I finally decided that the reason for all this pain was to get involved with the arthritis cause and help others who were children or young adults who suffered with chronic pain just like me.
It took a long time and it was mostly a mental battle to finally decide on and go through with a total hip replacement by means of an "anterior approach" rather than the typical "posterior approach."
In April 2013, I finally went through with the hip replacement surgery.
The recovery/rehab was not an easy one because the bodily mechanics that I had gained since birth had to all be corrected. A year later, I was living my dream of walking on the Great Wall of China in Beijing. I can say now that going through with the hip replacement surgery was the best decision I ever made. My quality of life has improved tremendously and there is not a day that goes by that I do not express gratitude for simple movements!
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