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    Life and Hope: The Impact of Organ Transplantation on the Human Experience
    Life and Hope: The Impact of Organ Transplantation on the Human Experience
    Life and Hope: The Impact of Organ Transplantation on the Human Experience
    Ebook161 pages2 hours

    Life and Hope: The Impact of Organ Transplantation on the Human Experience

    By Mark A. Greene

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    About this ebook

    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 meaninga unique story and real-life experience that demonstrates how the organ transplant experience so eloquently contributes to the human experience.

    LanguageEnglish
    PublisheriUniverse
    Release dateJan 14, 2011
    ISBN9781450274524
    Life and Hope: The Impact of Organ Transplantation on the Human Experience
    Author

    Mark A. Greene

    Mark A. Greene, an organ transplant survivor, earned a master’s degree in human services and wrote his thesis on medication adherence issues in the transplant population. He lives in central Illinois with his wife, Juli, and their three children.

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      Book preview

      Life and Hope - Mark A. Greene

      Life

      and

      Hope

      The Impact of Organ Transplantation

      on the Human Experience

      Mark A. Greene

      iUniverse, Inc.

      Bloomington

      Life and Hope

      The Impact of Organ Transplantation on the Human Experience

      Copyright © 2010 by Mark A. Greene

      All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

      The information, ideas, and suggestions in this book are not intended as a substitute for professional medical advice. Before following any suggestions contained in this book, you should consult your personal physician. Neither the author nor the publisher shall be liable or responsible for any loss or damage allegedly arising as a consequence of your use or application of any information or suggestions in this book.

      iUniverse books may be ordered through booksellers or by contacting:

      iUniverse

      1663 Liberty Drive

      Bloomington, IN 47403

      www.iuniverse.com

      1-800-Authors (1-800-288-4677)

      Because of the dynamic nature of the Internet, any Web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

      ISBN: 978-1-4502-7454-8 (sc)

      ISBN: 978-1-4502-7453-1 (dj)

      ISBN: 978-1-4502-7452-4 (ebk)

      Library of Congress Control Number: 2010917466

      Printed in the United States of America

      iUniverse rev. date: 01/07/2011

      To Dad

      1947–2010

      Contents

      missing image file

      Introduction

      Chapter 1. Turmoil

      Chapter 2. Death Creates Life

      Chapter 3. Life Since Transplantation

      Chapter 4. Genesis: The Beginning of Organ Transplantation

      Chapter 5. Adherence

      Chapter 6. Psychological Aspects of Organ Transplantation

      Chapter 7. Family Ties

      Chapter 8. Dilemmas: Ethical Issues in Organ Transplantation

      Chapter 9. Looking Back

      Epilogue

      BIBLIOGRAPHY

      Helpful Resources

      About the Author

      Introduction

      missing image file

      This is a book specifically written to the organ transplant community. Whether you are a recipient, a potential recipient, a donor, a family member, or even one of the many health care workers who are involved with transplant recipients, I wrote this book with you in mind. We share common experiences through our encounter with transplant surgery and the physical and emotional aspects of that process. As an author, I feel privileged to be able to identify with your experience. I hope that this book proves useful in your life.

      From the late months of 1982, when my symptoms began to worsen, to the summer of 1983, when I was finally correctly diagnosed, my life was a miserable experience. I have wanted for many years to tell my story, which shows what chronic illness nearly took from my family and from me. My experience is also a reflection of how transplantation can give recipients back their lives.

      As important as this experience was to me, my story is not the only story. According to unos.org, the website for the United Network for Organ Sharing (UNOS), there have been 14,140 transplants performed from January through June of 2010. In 2007, according to ustransplant.org, a website from the US Department of Human Services, there were 27,578 organ transplants performed in the United States. As of 2008, there were approximately 170,000 organ transplant recipients living in the United States.

      These numbers make this book relevant. In spite of the incredible disparity between those who receive a needed organ and those who do not, transplantation is changing the face of chronic illness, and it has been for nearly five decades. Organ transplantation gives patients with chronic illnesses opportunities that were once out of reach.

      Organ transplantation gave me my life back. It rescued me, and it rescued my family. Transplantation let me have a normal upbringing without the constraints of dialysis or the physical feelings of Thank God today is over. Now I have to do it again tomorrow. That is not an enjoyable way to live. I know, because I lived it. My family lived it with me. I do not feel blessed by my experience, but I feel blessed by where it has led me.

      For nearly thirty years, I have come to know the challenges of living as a transplant recipient firsthand. I know the frustrations of having to pay for an expensive medication that, if I had my choice, I would never have chosen in a million years, but it keeps me alive. I have had to borrow money to pay for this medicine. That is frustrating. I have had head colds for two and three weeks that most people would be able to shake in a couple of days. This is because of the immunosuppressive medications that I need to take.

      There are other frustrations with being a transplant recipient, but the rewards have been far greater in my experience. I have taken part in once-in-a-lifetime events, which I would not trade for anything. I am grateful for my education. What I have found in my academic research as a graduate student has led me to the ideas and the information that are in this book. I believe this information can help other transplant recipients and their families increase their opportunities for a successful and healthier future. I have experienced the mundane and the transcendent, and I am grateful for it all.

      To say that organ transplantation gave me a new life is an understatement of terrific proportions. To me and my family, organ transplantation was our promised land. After a year-and-a-half odyssey of misdiagnosis, which was accompanied by emotional and mental pain, chaos, and the near disintegration of our family, transplantation gave back everything that we had lost. I wish to share my experience, because it adds yet another face to the remarkable process that is organ transplantation.

      In thinking about the past, I recall the self-loathing that marked my life before I was diagnosed with end-stage renal disease (ESRD). Our family doctor misdiagnosed my condition, which nearly cost me my life, but in the end I have made the determination that I have been given too much in terms of the life-affirming experiences that I have had.

      Organ transplantation has risen into the mainstream as a viable treatment option for people with chronic organ failure. More importantly, it is more than a mere mechanical process. The surgery is only the beginning of a remarkable metamorphosis from existence at the cusp of death to an entirely new experience of life and living for many of us. Transplantation has directly affected the lives of more than a hundred thousand patients who have received their second chance at life.

      In order to explain what transplantation has done for me in terms of enhancing the quality of my life, I have to go back in time and explain the level of personal hell that I lived in, that my mother lived in, and that the rest of my family lived in. The mental and emotional toll was surreal. The healing, both physical and otherwise, has also been surreal. Our past is a difficult place to revisit, and at best during the last thirty years, it has received nothing more than a cursory glance. Rarely do we go there.

      There is another reason I have written this book, beyond my desire to give organ transplantation and its pioneers their deserved level of deference. The blame for those two years of abject misery rests squarely on the shoulders of a misunderstood and misdiagnosed illness and the inability of a small-town doctor to get it right when it really and truly counted, when everything, including a human life, my life was at stake. In the absence of that illness, our relationships would not have been threatened, and the enmity that our family experienced due to the effects of the illness would never have existed.

      For those who have not been put through this type of experience, it is hard to imagine the impact of chronic illness. What does it truly mean and what does it truly feel like to be given a new life? To understand this, it is important to understand where someone has been, compared to where they are. We then begin to grasp the importance of the process; we can also begin to understand the meaning of these experiences. In essence, the journey becomes more important than the destination.

      My story is only one of many. There are thousands of stories that make up the miracle of transplantation. Each recipient has experienced a miracle in their life and the lives of their families.

      Surgeons know how to successfully transplant an organ. However, the successful transplant story only begins in the operating room. It continues with patient involvement, including adherent behavior by the patient, involvement by the family, and an understanding of the potential psychological fallout of the transplant process.

      These components are the trifecta of successful postoperative treatment, and I get excited when I talk about them because I know that this type of information, if applied, will help patients have a much better experience with their surgery. As a transplant recipient, I know how important this information is. It is important for patients to be aware of the obstacles they may face beforehand so that they can prevent problems before they escalate.

      Postoperative success depends on factors that occur outside the operating room, outside the influence of the surgeon (although medical staff can have a great impact on the direction a patient will take). Ultimately, a patient’s success is that patient’s choice. This success is the culmination of family involvement as well as the patient’s understanding, interpretation, and acceptance of the situation. Patient success and an enjoyment of life postoperatively is not a fluke. It is the result of having the right information and caring people involved in the process. It is also the result of patients taking responsibility for themselves and for their health.

       Chapter 1

      missing image file

      Turmoil

      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

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