Ending the Waiting Game: Increasing Kidney Transplants in Canada

By Ken Merkley

The book reveals the reality of the country's kidney transplantation structure, including a disheartening examination of waiting times, the characteristics and weaknesses of the various living and deceased organ donor programs and the inconsistencies and discrepancies from province-to-province within the present arrangement. The author also offers a thorough examination of the ground-breaking organ donation and transplantation successes from other countries, as well as a timely and relevant section depicting unfolding, innovative transplant medical advances.

In addition to documented material from professional sources, the book contains a wealth of anecdotal information based on the writer's own experiences and the award-winning actions he has taken to improve organ donor and kidney transplant rates across the country. Patients with end stage renal failure will greatly benefit from the sense of empowerment and hope these experiences provide.

• Language: English
• Publisher: Ken Merkley
• Release date: Jan 2, 2015
• ISBN: 9780978350192

Ken Merkley

Ken Merkley is a retired senior military officer, political science lecturer, government financial analyst, management trainer and company CEO. He lives in Metchosin, British Columbia, with his wife Bernadette. Ken is the author of Ending the Waiting Game: Increasing Kidney Transplants in Canada, which explains how a kidney patient can improve their chances of receiving a quicker than average transplant, as well as how they can advocate with supporters to increase organ donor and kidney transplants in Canada. He has also written the Tim Murphy Mystery series, which includes The Raid, Heavy Traffic, Uncommon Complaints, Other People's Money and Murder Has Three R's. When not writing, Ken can be found on the Royal Colwood Golf Course.

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Advance Praise For

Ending the Waiting Game: Increasing Kidney Transplants in Canada

An impressive book, one that I can see is the result of a tremendous amount of research and work.

Paul Shay, Executive Director, The Kidney Foundation of Canada

This is a well-written, well-documented book on a subject that really needs to be addressed.

Jane Karchmar, Senior Editor, General Store Publishing House

This is a valuable guide for kidney patients, with many personal anecdotes and a wealth of pertinent information.

Dr. Rene Weir, Nephrologist, Victoria B.C. Renal Transplant Clinic

Prospective transplant patients will find realistic and insightful information [about] actions they can take to assist in receiving a donor kidney more quickly than by simply registering and waiting for it to happen.

Richard Mitchell, Kidney Transplant Recipient

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Ending the Waiting Game:

Increasing Kidney Transplants in Canada

Copyright 2015 Ken Merkley

Smashwords Edition

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Thank you for downloading this e-book. This book remains the copyrighted property of the author and no part of it may be reproduced, stored in a retrieval system, or transmitted in any form, or by any means, electronic, mechanical, photocopying, recording, or otherwise for commercial or non-commercial purposes, without the written prior permission of the author. If you enjoyed this book, please encourage your friends to download their own copy from their favourite authorized retailer. Thank you for your support.

Care has been taken to trace the ownership of copyright material used in this book. The author welcomes any information enabling him to rectify any references or credit in subsequent editions. Every effort was made to procure permission to reproduce inserted figures and images.

Cover design by Jim Bisakowski. Permission was obtained from the UCLA Daily Bruin to reproduce the cover's patient photo image.

Table of Contents

Acknowledgments

Dedication

Foreword

Introduction

Chapter One: The Prevalence of Kidney Disease in Canada

What Kidneys Do

How Kidneys Work

Causes of Chronic Renal Failure

Symptoms and Complications of Chronic Renal Failure

The Prevalence of Kidney Disease

Preventing or Delaying Chronic Renal Failure

Chapter Two: Coping on Dialysis

Types of Dialysis

Characteristics of Dialysis

Chapter Three: Human Kidney Transplants: The Treatment of Choice

The History of Kidney Transplantation in Canada

Advantages of Transplants

The Transplant Process

Early Treatments

Where Are We Now?

Some Good News

Chapter Four: Deceased Donors

Sources of Deceased Donation

Donor Organ Allocation Inefficiencies

Case Study One - Spain and Presumed Consent

Chapter Five: Living Kidney Donation

The Importance of Living Donation

Benefits of Living Donor Transplants

Variations of Living Donation

Paired Exchange

Chapter Six: Connecting Patients and Living Donors

Getting the Word Out

What a Potential Living Donor Needs to Know

Financial Considerations

Donor Surgery

Recovery after Surgery

Follow-up Care

Medical Risks of Surgery

Psychosocial Consequences

Chapter Seven: Significant Policy Restrictions on Living Donation

Overseas Transplants

Compensating Donors

Case Study Two - Iran and Paying Donors

Chapter Eight: Realizing an Effective Kidney Transplant System

Jurisdictional Differences

A Call to Action

What Else Can Be Done?

Case Study Three - Croatia and the World's Most Effective Transplant System

Chapter Nine: Checklists for Receiving Timely Transplants

Checklist One - What you can do to receive a timely kidney transplant for yourself

Checklist Two - What you can do to help others to receive timely transplants

Chapter Ten: Innovations in Transplantation: Some Alternate Approaches

Xenotransplantation

Stem Cells

Artificial Organs

Aborted Fetuses

Lab Grown 3-D Organs

Chapter Eleven: Conclusion: Overcoming Apathy

The Sense of Apathy

The Power of the Individual

Endnotes

Bibliography

About the Author

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Acknowledgments

A great many people were very helpful in the research and development of this book. I particularly wish to thank all those who were willing to be interviewed during the research phase of my undertaking, as well as the health professionals and kidney patients who read pertinent sections of the draft and provided valuable and timely advice, thus ensuring the content was as accurate and informative as possible. Of course I remain responsible for any remaining errors or inaccuracies.

Interviewees who offered particularly valuable subject matter included Dr. David Landsberg, Head of Nephrology at St. Paul's Hospital in Vancouver; Shannon McCloskey, R.N. Island Health Hospital Donation Coordinator; Ken Donohue, Director of Communications, Fraser Health Authority, and Kevin Campbell, transplant patient.

Content reviewers who offered important corrections and timely new information include Dr. Rene Weir, BC Transplant Nephrologist; Paul Shay, Executive Director, The Kidney Foundation of Canada; Karen Philp, Executive Director, BC Branch, The Kidney Foundation of Canada; Teresa Atkinson, kidney dialysis patient, and Richard Mitchell, kidney transplant patient and foreword author. Also, Kendra Fowler, RN, BC Transplant nurse, provided recommendations for interviewees.

I also wish to thank my daughter, Christina, for not only being there for me when I needed my second kidney transplant, but for allowing me to include her story and photo in the book. Also, my overwhelming gratitude goes to my consistently loving and supporting wife Bernadette, who shared my struggles with home hemodialysis treatments and the wonder and excitement of my two successful transplants over the past 34 plus years.

Finally, in preparing the manuscript for publication, my ever-patient and conscientious editor, Valerie Harlton, was instrumental in keeping me on track and arranging the content in logical order, as well as for copy-editing, ensuring proper foot-noting and formatting the text.

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Dedication

This book is dedicated to my daughter, Christina, my true hero.

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Foreword

My name is Richard Mitchell and I am a kidney patient with four years on dialysis and six more with a successful deceased donor transplant. As someone who has struggled with the disease, and in particular, with dialysis treatments, I appreciate how much a transplant means. After reading Ken Merkley's book, I can understand why he asked me and not a medically qualified person, such as a nephrologist or related professional, to write a foreword for him. The book is written by a kidney patient for kidney patients. I understand now that he asked me to write it because he felt I can relate to the high priority he places on kidney transplants and in reducing the period of time patients often must wait to receive one.

Let me begin by confessing to the reader that in the past I did not research my own kidney disease to the extent that I wished I had. This in spite of my realization for most of my life, including my childhood, there was the underlying knowledge that one day I faced, not the possibility of renal failure, but the certainty of it. Now that research is available, not just for me, but for any chronic kidney disease patient who will benefit by reading it. Most importantly, however, I believe prospective transplant patients and their loved ones will find a wealth of pertinent, realistic and insightful information making them better informed about the kidney transplant system in Canada, and about actions they can take to assist in receiving a donor kidney more quickly than by simply registering and waiting for it to happen. Readers will find helpful guidance and gain a clearer understanding of the current state of organ transplantation in each province. They will also receive a much needed sense of hope through the knowledge that they are capable of developing a plan that will result in the freedom from dialysis.

My struggle with chronic kidney disease was due to the hereditary condition called polycystic kidneys. Much of my life’s outlook was based on my mother’s experiences with this disease. I have since learned that the journeys kidney patients take are not always the same. My mother fought bravely through painful attacks, renal failure and hemodialysis. The incorrect assumptions I made could have been prevented through understanding the options that exist for each individual patient.

The experience of hemodialysis remains for me the most difficult part of my life so far. One year after starting dialysis a nephrectomy was preformed (removal of both kidneys) due to my enlarged polycystic kidneys. I will recommend to the patient that they strongly consider all attempts to keep their kidneys no matter how poorly they are functioning. Immediately after the operation I was faced with even more stringent fluid and diet restrictions. Over the four years I experienced extreme fatigue, insomnia, sever cramps and depression.

While I was able to deal with the negative physical side effects, for me the most difficult was the emotional. Hemodialysis robs an individual of the sense of freedom taken so much for granted in the patient’s past life. The rigors of treatment three days a week combined with the time required to recover from the fatigue the body undergoes reduces the possibility of any real opportunity for travel, and prevents many of even the most basic spontaneous things we all enjoy doing in life.

As the years went by it was the depression that took its toll on me. I chose to continue working, as well as take on other projects of interest, in an attempted to still have a normal life; however, the depression continued to build. It finally came to a point when I almost removed myself from dialysis completely. It was very difficult to relate what I was experiencing and feeling to others. I once told a close friend that it was like being continually tortured to the point you are ready to break and tell your capturers everything, but they never ask you any questions; they just keep on torturing you.

The kidney transplant that I received was truly my turning point. I am unsure as to how long I would have been able to remain on dialysis. After the transplant, not only did my normal life return in every way, but I also gained a positive, life-changing state of mind that one feels from surviving a heart attack or a brush with death. I will admit to the reader that this feeling does begin to wane over time; however, I will never forget the darkest days I spent on dialysis, nor the fate of my fellow patients who were not as lucky as I and had passed away while under-going treatment. I believe if more people actually had a real sense of what dealing with kidney disease and waiting for a transplant was like, many of the problems in the transplantation system that Ken identifies in his book would be immediately corrected.

Each CKD patient’s journey will be different and the outcome will be different. Ken’s book provides a look at the reality of kidney transplants as well as an examination of waiting times, the discrepancies within the Canadian system for transplants and the characteristics and weaknesses of the various living and deceased organ donor programs. There is a thorough comparison of the transplantation systems in other countries as well, and a section on timely and relevant information about medical advances. Patients with end stage renal failure will benefit from the sense of empowerment and hope with the transplantation options that are presented in the book.

Finally, Ken’s book contains many examples and suggestions for change, which the reader cannot help but wish to assist in implementing, either through lobbying government or through direct involvement with the many supportive organizations across the country.

My personal journey has taken me from gradual renal failure, through four years of grueling hemodialysis treatments and finally to a successful deceased donor transplant. I will never take for granted the gift of life and the second chance that was given to me. My wish is for other patients to see the reduction, or ideally, the elimination of the dialysis stage of the trip. Ken has outlined a set of policies and practices followed in other countries that, if implemented here, could make that happen. In the meantime, I am enjoying the quality of life my transplant has given me. My journey is far from over and my wish is for all potential transplant patients to have the same.

Richard Mitchell

Kidney Transplant Recipient 2008

Introduction

This book is first and foremost intended as a guide for kidney patients who wish to realize a timely and successful kidney transplant for themselves. In addition, it provides information on what they can do to help ensure that transplant waiting lists in Canada are reduced in the future. As a kidney patient myself, I want individuals suffering from chronic kidney failure to learn more about the transplant system and how they can take steps to obtain a transplant in the shortest possible time, allowing them to return to a full and active lifestyle. Then, having received a successful transplant, I demonstrate how we, as kidney patients, can work with others to lobby for changes in the donor and transplant system so that, ideally, waitlists can be markedly reduced.

I believe that in Canada we don't do nearly enough to increase the number of transplants performed, nor to decrease the length of time dialysis patients must wait for a kidney. Individuals waiting for a transplant need to become more proactive in increasing their chances of receiving one and must learn to overcome reluctance in explaining to others, including potential living donors, their requirement. As it is, current waiting lists get longer and longer, and more and more people suffer and die, never experiencing the gift of life that a successful transplant could have provided.

As many readers may be recently diagnosed with kidney failure, I begin with a review of the causes of renal failure, its treatment and prevention, and offer information on what to expect while on dialysis, as well as the actual transplant process. In later chapters, I provide transplant system policies and practices from other countries which have served to increase the number of kidneys available for transplantation and how these could be successfully implemented in Canada.

I also want to encourage healthy citizens to consider donating one of their kidneys to someone who needs one. From the information provided, I hope to show that the benefits of donating far outweigh the inconveniencies and marginal risks in doing so. Finally, I will discuss emerging alternatives to human donor transplants and the challenges involved with these options. Hopefully, one or more of these alternatives will ensure that in the not too distant future, transplant waitlists will become a relic of the past.

In Canada today, there are over 24,000 individuals on dialysis, a large number of whom could benefit from a transplant. Many of those who wish to receive a transplant will wait years before they finally get one and too many others will die waiting. While they wait, they will suffer the hardships of dialysis treatments, including debilitating cramping, nausea, fatigue and decreased mental acuity. In addition, their treatments will cause constant medical problems, including peritonitis, infections, anemia, and even skin and bone diseases. They will be forced to restrict their lifestyle to accommodate the relentless need to dialyze — to hook themselves to a fluid bag or a machine to ineffectively cleanse the impurities that build up in their bodies and which are normally taken care of by healthy, well-functioning kidneys.

For a person who has lost the use of these marvellous organs, and who is qualified for a kidney transplant, a replacement kidney from a deceased or living donor will allow them to carry on with a normal, full and healthy life, free of the misery and hardships that dialysis treatments entail.

On the flip-side is the satisfaction that living donors, or the families of deceased donors, achieve when they bestow the wonderful gift of life. Donors and their loved ones understand that patients receiving the gift of an effective transplant will return to a full and active life, and they are proud to know that their contribution will make this possible. They also find satisfaction in knowing the person they donated to will, in many cases, return to work and again become productive economic contributors.

Finally, kidney patients and potential donors can appreciate that a donation means so much, not just to the person receiving a new healthy kidney, but to all of society, given that the costs of dialysis treatments are so very expensive in comparison to the costs associated with a transplant.

And yet, in spite of the alarmingly long period of time most dialysis patients spend waiting, the medical community, policy decision makers and the public in general can't seem to come to grips with making the changes to the organ donation and transplantation system that we so urgently require.

Figure Intro 1 - The Gift of Life, Organ and Tissue Donation Saves Lives,

(Source: Organ Donation, Kidney Health Australia, ©World Kidney Day 2006-2015)

The reluctance of policy makers and medical practitioners to find the political will to introduce proactive solutions to alleviate the shortage of kidneys available for transplantation is appalling. Innovations and practices from other countries have often been ignored, or ruled out for so-called ethical reasons, even when they have proven to contribute to increased donor rates and significantly more successful transplants. In addition, many opportunities for an increased donor supply are simply ignored as too inconvenient or impractical for budgetary purposes. Reasons to maintain the status quo are regularly argued, often centering on out-of-date risks to donors or potential recipients, while risks associated with maintaining patients on dialysis continue to be downplayed or ignored.

There are from time to time, practices and innovations, such as anonymous donation and paired exchanges that attempt to make inroads in increasing the number of transplants. Generally, they have been adapted belatedly and usually only when they have proven to have had significantly measurable success in other countries. I will discuss these in later chapters, along with many other advances that have not yet been adopted in Canada.

Chapter One - Kidneys and Kidney Disease in Canada

There is a disease epidemic in Canada today that is little noticed, barely understood by the public and often downplayed by health professionals and policy makers who are in a position to introduce measures to assist in its prevention and to deal effectively with its consequences. The disease is kidney disease and it is now the sixth leading cause of death by disease across the country. 1 It is estimated that as many as one in ten Canadians has kidney disease, and millions more are at risk. 2 In 2009 alone, over 3,600 Canadians died from kidney disease. In order to appreciate the significance of the problem, we need to understand the important role that our kidneys play, why kidney failure is increasing and what can be done to prevent and treat it.

What Kidneys Do

Kidneys are one of the body's primary solid organs. Others are hearts, lungs, livers, pancreas and bowels. Kidneys are just as important to maintaining life as our heart and lungs. They perform five important functions. 3 They:

1. Regulate salt and water. Kidneys remove excess salt and water from the body or retain water when the body needs more.

2. Regulate the blood's acid-base balance.

3. Remove wastes and balance the body’s chemicals, including:

keeping sodium and potassium from food at specific levels,

removing excess minerals from the body in the urine, and

regulating the levels of other minerals (e.g., calcium and phosphate), which are important for the formation of bone, and prevent deterioration of the bones.

4. Produce hormones which help keep blood pressure in check.

5. Help bone marrow make red blood cells for increased oxygen delivery and energy supply.

Figure 1.1 - The Functions of the Kidney. Narrative images in Introduction to Peritoneal Dialysis, (Source: Renal Resource Centre - St. Leonards, NSW, Australia,

© Renal Resource Centre)

How Kidneys Work

Generally, the kidneys function by removing wastes from the blood and return the cleaned blood back to the body. Every minute, about one litre of blood (one fifth of all the blood pumped by the heart) enters the kidneys through the renal arteries. After the blood is cleaned, it flows back toward the heart through the renal veins. 4

Each kidney is made up of many tiny units called nephrons. Nephrons are made up of a glomerulus, which is attached to a tubule. Each