Nearly 550,000 people in the United States suffer from chronic kidney failure and require dialysis or transplantation to live. I am one of them. I inherited a genetic defect that caused cysts to form in my kidneys, eventually destroying my kidney function. For ten years I dealt with kidney failure, including more than seven years on dialysis and numerous complications, before receiving a successful kidney transplant. Called polycystic kidney disease (PKD), the genetic defect I have is the fourth leading cause of kidney failure in the United States. People with PKD have a 50 percent chance of inheriting it from an affected parent. My mother and sister had PKD and ultimately died from complications of the disease.
When I first realized that my kidneys might fail, I searched for resources that would help me prepare for what was to come. Plenty of information was available describing kidney disease and the ways doctors treat kidney failure. However, I could not find a systematic discussion of what it would be like to experience kidney failure and its treatment. My doctors were not able to help me imagine what the experience would be like. Although a doctor can be empathetic when interacting with patients, unless he has personally experienced kidney failure, a doctor’s perspective of kidney failure is largely a medical one, not a personal one.
I decided to write this book to provide a service for other people like me, people wanting practical information about what causes kidney failure, how patients can help themselves cope both physically and emotionally, and what factors can help them make personal health care decisions. Information helps people make better decisions, potentially leading to better outcomes, and helps them feel more in control of their condition—both of which provide a better quality of life. Although I am not a physician, my thirty-year career in medical research helps me understand the science behind kidney failure and the treatments available. Also, over the years I have learned how to cope with many of the problems of kidney failure. It is my sincere hope that this book will assist you in coming to terms with your own unique situation.
After first covering the basics of how kidneys function (chapters 1 and 2), why kidneys can fail (chapter 3), the diagnosis and management of kidney failure (chapter 4), and strategies to reduce kidney deterioration (chapter 5), I discuss the two treatment options for kidney failure: dialysis (chapter 6) and transplantation (chapter 7). In chapter 8, I describe promising treatments that are being developed and that one day may change the course of kidney disease. Throughout the book I include citations to other publications that you may wish to consult for further discussion of specific topics. A list of resources appears at the end of the book. Because the meaning of some of the scientific terms may be difficult to remember from chapter to chapter, a glossary is included that defines key words.
Throughout the book I discuss my personal treatment decisions. When considering dialysis, did I want to control my treatment on my own schedule at home, or have someone else do it for me at a dialysis center, on their schedule? In the case of transplantation, was I willing to compromise my immune system for the rest of my life and risk developing infections and even cancer in exchange for a better quality of life? Ultimately, I had to decide for myself. You will, too. I discuss the pros and cons of each treatment, based on my own experience and scientific research, to help you decide, with your doctor, what is best for you.
When I present scientific information related to kidney disease, I have tried to write in a way that makes this information understandable to everyone, including people with no scientific training. It’s worth repeating that educating yourself about your disease can make a big difference in preparing yourself for your future treatment. Realizing that you have the right and the ability to choose will be a major asset in having a say in your medical treatment. If you are grounded in sufficient knowledge to know what questions to ask, you will be in a better position to contribute to your treatment. Having choices, even when they are not always good ones, is empowering. This book will put you in a better position to make more informed choices.
I could not have completed this book without the support and advice of the many people who read drafts of the manuscript, including Dr. Bob Craig, Bobbie Festa, Nancy Hayes, Linda Howerton, Julia Roberts, Dr. Bernie Rabin, and Howard Jung, Jr. In addition, I would like to thank Jill McMaster and Dr. Y. Nabil Yakub for reviewing early versions of the book.
Special thanks are owed to Dr. Ronald Perrone. Ron shared many hours of his time explaining kidney failure from a doctor’s perspective and making sure that the information in this book is accurate. He did so with good cheer and clear explanations. Any inaccuracies that may have crept in after his thorough reviews are my sole responsibility. I greatly appreciate Ron’s time, scholarship, and collegial spirit in bringing this book to fruition.
Finally, I wish to thank the Johns Hopkins University Press for supporting this project, especially my editor, Jacqueline Wehmueller. Her skill, support, and advice were indispensable in creating the final work. It was great working with her.