Editor’s note: April is Donate Life Month. The BOC is privileged and extremely grateful to have NATA President Jim Thornton, MS, ATC, PES, share his personal story about being diagnosed with polycystic kidney disease (PKD) and receiving an organ donation in this two part blog.
Part 1: The Diagnosis and Finding Hope
The story I am about to tell is very personal. I have shared it with very few groups of people; however, my decision to share it in this medium is the hope that someone out there who is trying to make up their mind about organ donation will decide to give the gift of life to someone if they can. It is a personal decision but one that can change another’s life beyond any other gift available to us as individuals.
I was diagnosed with PKD in 2000. I thought at the time of my diagnosis, that it was the darkest day of my life with very little hope. I had seen what the same kidney disease had done to my mother for roughly five years previous. Her outlook was always bright and was difficult for me to understand. All I could see was a woman who was involved in peritoneal dialysis that seemed to control every aspect of her life. My father appeared to be stricken with the responsibility of caring for my mother that I thought burdensome. As I look back now, I realize that not only did my father care for my mother’s physical needs, his kind, loving and spiritual nature cared for her in other ways that I never realized until many years later.
It was difficult for my parents to travel because they had to ship all of her bags of fluid, the machine and connector hoses. This was always a bitter pill for me. My wife and I along with our three children live in Pennsylvania, and my mother and father lived in a little town in central Utah. In case you are wondering, yes, we are Mormons. Although my upbringing and our faith was LDS, and the family was the center of the lifestyle we shared, I was somewhat bitter because her visits east became more and more infrequent. I was angry with God! I felt cheated and I also felt that my children were being cheated by not being able to spend time with the grandparents that they loved so much. It is ironic that this very situation was a hidden challenge that would become very personal in just a few short years.
As you might be able to tell, I was thinking a lot about “me” and not very much about the other people in my life. Although my attitude was that my kids were being cheated, deep down I realize now that I was being selfish about a situation that could not be helped.
I only found out that I had PKD because my mother’s dialysis was no longer working and it became evident that she needed a transplant. The potential for hemodialysis was something we wanted to avoid. We are a very close family. In spite of my personal selfish shortcomings, I was (as were my three younger siblings) willing to give my mother a kidney. The entire family underwent testing to determine whether any of us were a genetic match. Unfortunately none of us were. I am a Certified Athletic Trainer by profession and have witnessed tons of diagnostic testing with my own athletes and patients. I have been around the medical aspect of taking care of athletes for almost 30 years. When the technician doing my ultra-sound said, “I will be right back, I just need to check on something,” I knew that something was wrong . . . and I was sure I knew what it was.
Later that day I got a call from a physician. He said, “Jim, you have polycystic kidney disease.” I thought I was prepared for the call. I knew it in my heart but had not yet given it a place in my head. I was devastated. All I could think about was how this was going to affect me. I remember not even thinking about how it might affect my wife and children. It is difficult to remember how long it took me, but it was a short while after that I realized that although I had been diagnosed, “I” was still okay and my mother was not. It’s funny how selfishness blinds us. The disease of “me” was evident in my life at that time.
I was humbled . . . brought to my knees. It forced me to think of my youth. I had a wise man once tell me that the opposite of love is not hate, for they are too closely connected to be opposites. You may hate someone because you loved him or her and they don’t love you anymore, or you may hate someone you loved who never loved you back. You may hate someone because they don’t believe like you do and so you can’t love them. We see it everywhere in our world. I learned that love is often replaced by selfishness and is its mirror opposite; for if you only think of yourself, how can you truly love others? It took me years to realize that what my friend had told me was true. I believe it to be a deciding factor in virtually all of our relationships with others that we meet, spend time with or call our fellow man.
Seven short years later, I found myself on the verge of kidney failure. My labs were not good and we were looking at dialysis as the next option. I had been on the transplant list at that time for about three years. My nephrologist and I discussed the potential of a preemptive transplant by one of my siblings. Once again we went through the matching process and found out that my sister, just four years my younger as well as my brother who was eight years my younger, were perfect matches. Remember that seven years previous to this time, none of us were a match to my mother, but surprisingly two of my three siblings were a match to me.
My youngest sister had also been diagnosed with the same disease when we were all tested for my mother. It was a difficult time, but a time that I believe made me a better man. I still have my faults, as we all do, but I hope the lesson I learned helped me to stand a little taller and be a little better in the “selfish” category. After a time of discussion and weighing the possible needs of our youngest sister, it was time to formally ask my sister Kristine for the gift of one of her kidneys. It was a humbling experience to ask for a sacrifice like that of someone else. I mean, she was my sister, of course she would say yes, but unfortunately this is not always the case. I know of stories of people who decide against donating an organ even to a family member for fear of what could go wrong. I get it. I would never fault someone who is not able to make that decision – but what a gift donating an organ is for someone whose outlook on life is dim at best, even with the best technology available.
Stay tuned for the second blog: Preparing for Surgery and Giving the Gift of Life.
Jim Thornton, MA, ATC, CES