Here is my speech:
I am currently waiting for my second kidney transplant.
I received my first kidney transplant in 1998 when I was ten years old. My kidneys had failed two years before that due to a rare autoimmune disease, called microscopic polyangitis. The disease caused both of my kidneys to fail in a short period of time, and I was placed on the transplant waiting list and started peritoneal dialysis. At the time the wait time for a kidney was shorter than it is now, and I was very lucky to have received a transplant from a deceased donor. Since then, I have been an advocate and promoter of organ and tissue donation.
One of my first memories of honoring my donor was my mother making a quilt square in 1999. She wanted to show her thanks and gratitude to those who helped save my life, my doctors; Lande, Mak, and Barry and most importantly my donor. Each time I see the quilt piece, I get so excited to point it out and share my story with those around, and then I take a step back and am in awe of the stories surrounding my piece and lives saved that year. To think my kidney lasted almost 18 years is truly inspiring.
It would be awhile before I would contribute another quilt square. I would be finishing high school, college, and traveling the world, living the free life my donor had given me because of my transplant.
In 2015, 17 years later, I was being asked to make a quilt square. I chose two pictures to be placed a on a it. One of them was when i was a little girl at Doernbechers Children's hospital, and the other one was me holding a sign in that stated Kidney transplant recipient 16 years! It felt right, to show the past and present. Stating how proud and grateful that my transplant kidney was still functioning. However, later that year, my kidney function would vastly decrease, and I would be going through the process of being placed on the kidney transplant list.
By 2016, when it was time to make a quilt square, I personalized it with what I was going through. I created a square that embodied the message of waiting and wishing for my transplant. It shows exactly how I felt for most of that year, and continue to feel today.
When I was younger and sick, my single mother took on most of the mental stress and worry for me. I was never thinking about what wrong was with me and limiting myself because I was sick. And, I never thought that I would not get a transplant. However, nowadays, I find it harder to hold everything in. The wait time is longer and more people are in need a transplant. Waiting for a transplant is emotionally, mentally, and physically draining.
I can not ignore how kidney disease impacts my everyday life and well being. I am constantly tired and having chosen to do peritoneal dialysis, my treatment stays with me night and day. I can only hope that I receive a my kidney transplant soon. Having already received a kidney transplant, I know how freeing it can be.
As I have continued to wait for my life saving kidney transplant, I have found that love, my family, friends and support have helped make this journey better. Over the past two years, I find the hardest thing that I have had to deal with is not being able to find a living donor. I’ve struggled with talking about living donation, finding living donors, and the rejection of friends and family being ineligible to donate. One of the things that has helped through this process is telling my story through a website, I created. I first thought of the idea at a Donate Life Northwest program, where I learned what other kidney candidates were doing to get the word out. Through my website I try to educate people about kidney disease and the facts of living donation. I also try to write blogs about my personal experience and what I am going through. I find it therapeutic to write about it and less pressure to always reiterate my story in detail. With my website, I can easily direct people to correct and detailed information.
From the ups and downs of potential donors, doing nightly dialysis and the care that comes with it, I have taken comfort in having my support system by my side. That is why this year, my boyfriend, Joshua and I made a square together. It shows a picture of my mom, him and I and at snowshoeing at Crater Lake and states, LOVE, FAMILY AND SUPPORT.