Chapter Seven: The Wait

In February 1995 and going on to 13-years-old in six more months, my kidney function worsened significantly. All the precautions I took to try to maintain the little precious and 10% kidney function I had left had been useless. My kidney function was failing faster than I could keep up. I no longer had a choice.  I had to be placed on the National Transplant Waiting List for a second kidney transplant--this was my only chance at living life again.

There were fuzzy memories of a clipboard, a smile from a man or woman, my doctor constantly gazing and talking to my Father, and endless tests of my blood type, tissue type, and more nameless tests. I was so accustomed to the needles, bruises that resulted, and the mirage of questions and monitoring that I eventually became immune to everything. In only a matter of a month or so later, my kidney function was continuing to fail and so I underwent surgery to prepare for hemodialysis if and when the time would come that I did not receive a second transplant in time and my transplanted kidney had failed completely. The hemodialysis procedure involved a fistula, or otherwise known as a filter that would remove the wastes that the kidneys could not longer perform [Wikipedia fistula/Hemodialysis procedure information: http://en.wikipedia.org/wiki/Hemodialysis#AV_fistula]. The fistula filter made a humming noise when I pressed on it and it surprisingly brought me a comforting feeling. I did not want to think about going on dialysis, because it required a strict and regimented routine of filtering out the wastes from the body at least three days a week through a tube and needles. At the age of 12-years-old, I did not want to be stuck waiting on a machine to do the job that my kidneys could no longer do and wondering when I would go out to see and spend time with my friends and family and live my life. More than that, thinking about dialysis meant that I was ever closer to touching death. I just wanted my kidneys to work. I just wanted my life back.

I thought I would be an emotional wreck and life would be beyond chaos with balancing my failing transplanted kidney along with my personal life with my loved ones and school work, but life was strangely calm and peaceful. Life was going on. Instead of feeling like my world was broken into a million pieces as I did with my limited mobility and hip problems, I felt a stillness that only time would tell when I would receive my second kidney transplant or when I would have to be put on dialysis. Somehow, I had jumped over any hurdles of anger or despair and had reached acceptance, or perhaps I had truly just given up on everything and even myself.

I continued on with my school assignments to receive the highest grades possible. I treasured moments with my friends that involved grins, giggles, and girly banter. My anti-social school life and each passing school day was like a dream. I sometimes stared at my Father’s face to imprint him in my mind. I would see his weathered face from raising two girls on his own whilst juggling work. So many times, I wanted to say to him: “Dad, I’m so sorry for all the trouble I caused you with my health problems. Can you ever forgive me?” I missed my sister who was living up her new life at university. I was filled with regret that I never spent more time with her. I should have spent time with her when I had the chance. I wanted to say to her: “Sis, I’m so sorry for taking all the attention from you. It is not fair. Life is not fair.” I never said to my Dad, sister, and especially my friends about all these things that I thought about. Saying these things would mean that I was too close to death, and it was not that point yet. Not at all.

As my health worsened, I made it a point to no longer think about and to forget about death and my health. I only wanted to think about and remember my life. I began to appreciate and open my eyes and mind to life and the world around me. The simplest things meant the most to me: fresh air, puffy white clouds, sapphire blue skies, a flower blooming, a bee buzzing, the warmth of the sun, the way my school smelled versus the hospital, the way my Father’s eyes lit up when he smiled at me, the way my sister put on her lipstick and then tried to dress me up in pigtails and cute clothes, the way laughter sounded from all my friends and family, and just the way life was and how all its smallest things were the most beautiful, extraordinary, and special. Life was so beautiful and I could only thank death for making me see that.

My facial complexion turned a tinged white and yellow color. I felt weaker, more tired, and more exhausted with each and every single day. Everything I did made me tired and I was not sure if it was a physical or mental exhaustion. It was a strange concoction combination to feel weak, weary, but happy and alive all at the same time for life and living. I was still holding on to hope. Life went on as usual as though nothing had changed, but there was a change within me that I could not explain or comprehend. As the days went by and soon the months, the truth was sinking in that the waiting and wondering when I would receive my second transplant was but a question mark and the despair and anger that I did not feel at the beginning were now creeping up on me, ready to grasp me in a bone-crushing grip.

February 1995: Waiting for another kidney transplant

Waiting was a part of my life since I was little. I waited for my first kidney transplant. I waited for my parents’ divorce and the misery in the home to end. I waited to form a non-existent relationship with my sister. I waited to find friends to confide in and go to as an escape from reality. But, this waiting was different. Very different. It was a waiting I never experienced. It was the kind of waiting that jolted me when the phone rang and my crossed fingers uncrossed that this was to be THE CALL….THE CALL that would save my life that a match had finally been found for a second kidney transplant. It was the kind of waiting that twisted and turned my spirit and soul slowly with wondering if I would live to enjoy the simplest, sweetest, and most beautiful moments with my loved ones. And, it was the kind of waiting that made me think endlessly that someone else is going to have to die for me to live, and this petrified and made me feel guilty all in one.

February turned into March and March turned into April. April was inching closer to May. There were murmurs that I would begin hemodialysis soon and a dread and fear silently and slowly slipped into me and became a part of me. I was scared about the treatments, but I was more so scared about how I would be after each treatment and the effects on the people I loved. As always, I tried to stay positive. Everything would be okay. At least there was a machine that could buy me more time to kiss my Father goodnight, to hear about my sister’s college adventures, and to gossip with my friends, and to continue on with life with all the people I loved as if there were no tomorrow and only now.

As the seasons changed, I could see more clearly than ever that time was turning into my worst enemy. Sometimes, the sounds around me disappeared, the colors faded, and all I would see were my Father and sister or my closest friends spotlighted in my mind. I would think: “How much more time do I have with all of you? How much more time do I have?” I basked in moments with my Father and sister as though they were my last. When I sat in class, I wondered on an almost daily basis if I would live to finish junior high school to find out if high school was really the best time of my life. The faster time fell through my fingers without a sign that my life was to be saved, the faster anger, bitterness, and hopelessness filled me.

Every living creature was being poked awake with the coming of the Spring season, but I was dying inside with this wait. There was still no word and no phone call of a second transplant coming my way anytime soon. I started to mentally prepare for the hemodialysis treatments. I started to think more death rather than life. I was not scared of death, but I was scared of time and how fast it was moving forward. Yet, I had no choice but to continue on with this wait and wondering every single, waking, breathing, and beautiful day if I would ever get to live my life ever again.