At the age of eleven, Mark Greene nearly died. Neither he nor his parents knew that Mark suffered from end stage renal disease; he would need a kidney transplant to survive. Now, more than twenty-six years after his successful transplant operation, Greene tells the story of his survival following that operation.
Currently, there are approximately 170,000 organ transplant recipients in the United States, each with unique stories but sharing the commonality of improved quality of life. In Life and Hope, Greene discusses important principles that will not only contribute to the longevity of organ transplants, but also help recipients continue to improve their overall well-being. He blends personal experience and academic research to both teach and enlighten in a way that brings meaning to organ transplantation.
Greene shares a very personal story about his ordeal with a misdiagnosed illness that nearly took his life and nearly destroyed his family. His story is one of transformation, as he moves from the brink of death to a life full of meaning-a unique story and real-life experience that demonstrates how the organ transplant experience so eloquently contributes to the human experience.
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Life and HopeThe Impact of Organ Transplantation on the Human Experience
By Mark A. Greene
iUniverse, Inc.Copyright © 2010 Mark A. Greene
All right reserved.
It was another bleak morning in early 1983. Dad had already left for work, and I was in tears trying to get into the bathroom. I was ten years old and scared. The nausea was becoming more intense, and I knew it would only be a matter of seconds before my entire breakfast came up. Mom was yelling something at me through the door. I do not recall exactly what it was, as the waves of nausea were too intense; I could not focus on what she was saying. Any moment it would be all over.
Then it happened, I threw up all over the wall in front of me. I felt an instant sensation of physical relief, and then regret. I was so sorry. I knew Mom was going to be upset with me. I did not want this to happen, and I would have done anything to stop it. This was a game that we played almost every morning, only it wasn't truly a game. Everyone was losing. I had no control over the situation. Mom had no control over the situation either. She just wanted me to get through breakfast without vomiting. We all just wanted life to be normal. This was how most mornings started: the nausea, the vomiting, the arguments. I would spend the rest of my day at school enveloped in the persistent shame of it all.
Chronic illness is more than just a physical experience. It can wreak great havoc with all our emotions and with nearly all aspects of our life (Engle 2001). It nearly decimated my relationship with my mother and came between my mother and my father. Our lives were turned upside down. The misunderstanding of this illness led to dysfunction in our lives. After my diagnosis, Mom and I were three hundred miles from home and Dad had to become provider and full-time caretaker of my sister, Lisa and brother, Matt. There was great uncertainty regarding my future. Chronic illness interrupted our lives in a way that few other things could have.
Victor Frankl once wrote, "An abnormal reaction to an abnormal situation is normal behavior" (Frankl 1984, 38). This is the only working explanation I could find to define those two years of our lives. The way in which this experience was reacted to defined abnormal. I struggled for a very long time before deciding to share this experience.
My memories after twenty-seven years are like pieces of broken glass. There are the large pieces, those memories that stand out most clearly and are the easiest to recall. There are the smaller fragments of memories that I recall with only hints of clarity; there are the minuscule pieces that have disappeared forever, never to be found; and there are the memories that remain permanently etched in my mind. This chapter is not intended to encompass the totality of my experience. It would be disingenuous of me to state that I remember everything just as it happened nearly three decades ago.
As I mentioned, this book is not only about me. It is about the meaning and role of organ transplantation. My experience elucidates why transplantation is so important. It is also about how patients, physicians, transplant teams, and family members can ensure the long-term success of transplant recipients once a transplant has been received. Nothing is guaranteed but we can certainly increase the odds. This chapter touches on the salient experiences that defined my family's collective struggle with end-stage renal disease (ESRD). I have chosen to use brief glimpses of my experience to provide a meaningful context of how organ transplantation has changed one life in the tapestry of lives that make up the transplant experience. My story is only one among many thousands.
The memories of my childhood prior to becoming ill are rather normal and pleasant. Although we struggled for two years without a correct diagnosis to my illness, my younger childhood memories are very happy, very joyful. I remember having fun at family gatherings, picnics, holidays, and school plays. I was a fortunate young child with doting parents and grandparents. I went swimming, to the mountains, and to birthday parties. My life was carefree.
We were a normal family. My father worked in the oil refining business. I always remember him as a hard worker. My mom was a homemaker and doting mother, and my younger sister and brother and I led a happy, spontaneous, and carefree life. In 1978, we moved to Wyoming from New Mexico; I was almost seven, and my life began to change. In retrospect, this move was very fortuitous for me. I do not believe in coincidence. This move from southern New Mexico to northeast Wyoming put me in a position to have the donor that I would eventually need.
Fortunately, there were some positive memories. I was in the first grade and looked forward to Mom waiting for me at the bus stop at the end of our street. I was in a new state and a new school. It was all quite overwhelming. But Mom was there every day to walk with me up the street to our new home. It was comforting to know I had that to look forward to at the end of the day. That is one of the many positive memories that I have of that time in my life, but things soon changed.
I began to make new friends, and I was getting settled into a new routine. I had a little sister, Lisa, and Matt had been born the year before we moved. Then my health began to gradually worsen. When I would wake up in the morning, I would feel nauseous. The nausea would usually dissipate, but it never completely disappeared. The symptoms were subtle enough to be dismissed.
Life gradually began to be turned upside down. It became more and more difficult to eat. I would spend hours at the dinner table trying to eat a normal portion of food. Dinnertime was such an ordeal. My parents always thought that I was just being stubborn. Children often take too long at the dinner table, right? Isn't there one in every family? However, eating made me sick. I would feel myself getting flush, I would get warm, and then I would have cold sweats. Sometimes nothing happened, but other times I would have to vomit. No one understood what was happening to me, but we lived with it.
Over time, as the symptoms worsened, an insidious brew of emotions began to envelop our family: anger, resentment, loneliness, distrust, and fear began to well up inside all of us. I began to bottle things up emotionally.
Our doctor did not think there was anything physically wrong with me; he attributed my condition to a psychological problem. I knew that my symptoms were not just a plea for attention, but as a child I was not in a position to challenge my mother or my doctor. All I knew was that I was physically miserable, but no one listened. I felt completely helpless, and that feeling remained until it was nearly too late. As time progressed, I desperately wanted someone to understand what was happening to me, to realize that I was not playing games and that I just needed help. Intellectually, however, I knew that nothing was going to change. I suffered in silence. I felt that I was never listened to, so why should I bother?
I am ashamed to admit that I have retained this dysfunctional coping mechanism over the last thirty years. Silence has come to be my choice of expression for many emotions, especially anger. I am not the type to lash out; I usually express anger through silence. I did not feel as though I was listened to at that time in my life.
The real cause of my illness eluded detection, and we pursued the same course for many months while I continued to slide downhill. The chasms in my family grew while the disease progressed. We were told that there was no physical cause to my illness, so there had to be some emotional or psychological problem.
In retrospect, it is quite disturbing to realize that I could have easily died. That is the stark reality of the situation. We were living our lives, going on family vacations, participating in the monotony of everyday life, trying to adapt to my "behaviors" and live with them, or ignore them, when I should have been in a hospital for treatment. This could have and really should have ended so badly. I was that close to death, but no one had a clue.
Another effect of my illness is nocturia, which is marked by frequent nighttime urination (in my case, after I went to bed). This symptom of renal failure began when I was around nine years old as my disease began to progress.
Each day seemed to hand me a new lesson in humiliation. I remember one cold morning in 1983, when there was about a foot of snow on the ground. I had missed the bus because I had to change my sheets after wetting the bed once again. I knew what I had to do. I started on my trek to school. Luckily, the sheriff had noticed me plowing along in the snow and pulled his truck alongside me.
"Are you okay?" he asked. "It's a little cold to be walking all the way to school," he stated in a friendly, matter-of-fact tone.
"I missed the bus," I replied sheepishly.
"Can I give you a ride?"
"Sure!" It was kind of exciting to be in the sheriff's truck, and I would have been late had he not given me a ride. It was thought that having to walk to school would be a meaningful deterrent against any more of my behaviors, that I would be more careful not to miss the bus in the future. Our doctor had truly convinced her that there was nothing wrong with me and this absurdity led to how my mother handled the situation.
It was experiences like these that were defining my existence as a young child. These experiences, in effect were normal to me. It was all I that I would know for well over a year. It is difficult to compile more than a year's worth of visceral emotions and perpetually negative experiences into a chapter in a book. For an eleven-year-old child, this experience was nothing short of abysmal.
My illness had made me socially invisible. I distinctly remember walking around the playground, all alone. The other playground equipment and the adjacent fields were full of cries of children screaming and laughing. I was completely detached from their animated expressions of sheer, unrestrained delight. That was a part of childhood that I did not understand. I could not relate to it on any level. My life was lived in a mental cave created by dark circumstance. There was an inexplicable and hopeless futility to it all. The mere act of living had become a chore. I hated life at school. I hated life at home. I was lonely and afraid.
Mom had grown weary of my scenes at breakfast. "Why are you doing this?" she would ask. "What is wrong?"
"I don't know," I would say as I shrugged my shoulders. I truly did not know.
Well, something had to be wrong. Kids didn't just throw up after almost every meal for no reason. In February of 1983, I was diagnosed with anemia and given iron supplements. They didn't work. Things only continued to get worse through the rest of the winter. We were trapped in some perverted version of Groundhog Day. The arguments grew more intense as time went on.
As winter melted into spring and the temperatures warmed, I still found myself coming to school late nearly every morning, dejected and humiliated from having to change my sheets, which was causing me to miss my bus. I am now thirty-eight years old, and although there are well over twenty-five years that span between now and then, it is still difficult to go back to that time. Little had changed since the doctor had given me the supplements for anemia. I was still vomiting a lot, still fatigued, and still hating life.
Dad noticed that something was happening to me. He saw how pale, gaunt, and sickly I looked. One summer day after lunch, my dad volunteered to take me to band practice on his way to work. His truck was parked on top of a hill behind our house because our street was being repaved. On the way up the hill, feelings of sheer panic and terror set in as I felt an uncontrollable wave of nausea sweep over me. In an instant, I vomited. Dad did not yell at me. He looked at me with a look that was somewhere in between pity and annoyance. I believe that annoyance had more to do with the situation and less with me. He simply tried to help me clean up.
Dad was well aware of the tension between my mother and me. Although Dad knew what the doctor had told us, I don't think he was ever fully on board with the diagnosis. If he was, then I believe he would have been as frustrated with me as Mom was. But he wasn't. He was obviously frustrated with the situation, but I don't remember that frustration being turned on me. He was trying to protect me against that frustration.
Dad didn't spare the rod when I did something blatantly wrong, but he always seemed to be on my side. He questioned the diagnosis, which was a source of friction in our home because my mother had accepted our doctor's conclusion. My illness didn't affect my relationship with my father as much as it did with my mother.
In the spring of fifth grade, my classmates and I all went outside to a grass track for gym class; we had to run around this track two or three times. No one had a problem with this, except for me. It was not long before I became very short of breath; I was nauseous and started to experience intense muscle cramps. I had to walk most of the way. It was humiliating to be the only student who could not finish what should have been a simple feat. Most children are naturally energetic. They ooze excess energy and excitement (ask anyone with a toddler). I looked at the ground as all the girls jogged by me while I walked my way to the finish line. (When you are eleven, this is extremely humiliating.) A few of the kids teased me, and I tried to laugh it off, but I was in so much pain. Most kids simply left me alone; they did not understand what was wrong with me. Things like this were happening with more frequency, and I was beginning to feel more and more isolated.
I was not the only victim. My mother was made a victim by this illness as well. In a very real way, our entire family was victimized by our doctor's inaccurate diagnosis of my illness. So much heartache could have been avoided. It would have been so easy to go to a larger town with different doctors and a better equipped hospital, but we did not. Mom seemed to readily accept our doctor's assessment. She placed so much faith in him. He had been our doctor since we had moved to Wyoming in 1978. I do not know why we did not seek a second opinion from a more competent doctor. A second opinion was never thought of as being necessary. I believe that denial played a large part in the way events played out. No one wants to admit that their child is critically ill. It is so much easier, psychologically and emotionally, to accept another answer, any other answer. In my case, the other answer was that I was acting out.
Sometimes, in such extreme situations, we become paralyzed with the enormity of it all. Seeking a second opinion may have been the logical option to someone looking from the outside in, but our logic had been replaced with denial.
Denial is a reaction to highly traumatic events that cause great anxiety. It is a distortion of our reality. When you cannot accept the reality of your situation, denial is often the result. When you are faced with overwhelming circumstances in life, denial offers at least a temporary protection from the ugliness of that reality. In some cases, it is just how we cope as human beings. I believe wholeheartedly that both of my parents would have done anything necessary to help me had they been given proper information, but they were not. Mom would later prove her willingness and self-sacrifice, once she received a correct diagnosis.
It was easier to be in denial over my illness, because someone in authority, our family physician, told us that nothing was seriously wrong with me. I believe my parents would have done anything on my behalf had they received a correct diagnosis earlier.
It is difficult to describe the misery my entire family was feeling from this illness. I suffered from the illness, but we all suffered the effects. The illness, along with the attached misery, was allowed to continue unabated. I was diagnosed as anemic, but that was not the problem. I was slowly being poisoned by kidney failure.
Excerpted from Life and Hope by Mark A. Greene Copyright © 2010 by Mark A. Greene. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Chapter 1: Turmoil....................5
Chapter 2: Death Creates Life....................24
Chapter 3: Life Since Transplantation....................33
Chapter 4: Genesis: The Beginning of Organ Transplantation....................41
Chapter 5: Adherence....................53
Chapter 6: Psychological Aspects of Organ Transplantation....................68
Chapter 7: Family Ties....................85
Chapter 8: Dilemmas: Ethical Issues in Transplantation....................93
Chapter 9: Looking Back....................106
About the Author....................123