Out of the corner of my eye, I saw my father walking towards me. I turned my head to the right as I sat in my dialysis chair, and we both gave each other a happy and excited smile. That hopeful day of August 12, 2002 was the last dialysis treatment that I had. He stood by my side as he always has in life, and handed me a present. I excitedly opened it to find a beautiful charm bracelet; the one I am wearing on the cover of my biography, “My Favorite American.” Whenever I wear that special bracelet, it takes me back to that exciting day when I could taste the freedom of no more dialysis.
Last weekend was full of Independence Day celebrations: fireworks, parades, barbeques, picnics, concerts, and family reunions. Everyone was filled with joy while surrounded by the colors of red, white and blue. These festivities sparked the thought that for the more than 103,000 individuals on the kidney transplant waiting list in the United States, freedom means spending their lives free from dialysis. However, I consider those of us with PKD lucky to have a disease where the affected organ has a machine that can be our life bridge and keep us alive until we are fortunate to receive a kidney transplant. Not every transplant candidate can say the same.
Dialysis was quite taxing on my then 19-year-old body. I did not feel well during the seven months of dialysis and got awful cramps during treatments. It was a strange feeling to not have to pee, due to both of my kidneys being removed. I became accustomed to being out with friends and them saying that they had to go to the bathroom and naturally looked at me to see if I did too. Then we would both realize that was not possible and I would wait while they went to the bathroom. There were many diet restrictions and I had to be careful with my fluid intake. I learned quickly that things like ice cream, ice cubes and popsicles would rapidly increase my fluid retention. I would gain several pounds of water weight between dialysis visits, which the machine would then remove during my treatments.
I am thankful every day for the freedom that Sally, my kidney donor, has given me. Next month will be 11 years since my kidney transplant. It is a blessing to have so many years full of freedom by not being tethered to a dialysis machine. I can only wish that my next transplant will be seamless and I can avoid dialysis. Still 11 years later, the sound of peeing is a wonderful thing. It is funny the little things that some people appreciate and some take for granted. I like to believe that although our freedom in life may lessen or increase, depending on what obstacles we are facing, that we have the power within us to find ways in which to celebrate each day that we are alive and well.
I would love to hear your freedom story. Whether you are free from dialysis thanks to a transplant; on dialysis and waiting for a transplant; or in an earlier stage as a PKD survivor; how did you spend your 4th of July and what does your freedom mean to you?