Living With Dialysis - The Guide

By Jeff Parke

This booklet has been written for you, your family and your caregivers. I hope it helps you better understand kidney failure, dialysis, and your treatment options. You are the most important part of your treatment team and by using the advice in this guide, you will become more knowledgeable about End Stage Renal Disease. The ultimate goal of this guide is to provide the highest standard of [non-medical] advice possible - so that you can obtain a deeper understanding and respect for the challenges that kidney disease presents. My mission is to educate and empower individuals and families affected by kidney disease.

I seek to educate society about the negative and positive sides of this disease. I strive to raise public and professional awareness of this disease and serve as an advocate for those who suffer from this disease. I will encourage those in the kidney community to never give up in their search to help their loved ones reach their full potential, funding efforts toward this end through appropriate research for finding a cure for both the physical and emotional damage from which so many affected by End-Stage Renal Disease suffer.

Ultimately I am here to inspire, educate, guide and assist you as you journey through the many stages and challenges of kidney disease and dialysis. This has been one of my callings and it has helped me to deal with what is going on with my body. I want everyone to understand the effects of end-stage renal disease and understand that there is hope, through dialysis so that no one has to suffer considerably. There is life after this kind of diagnosis and it can be a great one as long as you are educated about what is going on, what your options are, and you learn to establish a voice for yourself.

This booklet has been written for you, your family and your caregivers. I hope it helps you better understand kidney failure, dialysis, and your treatment options. You are the most important part of your treatment team and by using the advice in this guide, you will become more knowledgeable about End Stage Renal Disease. The ultimate goal of this guide is to provide the highest standard of [non-medical] advice possible - so that you can obtain a deeper understanding and respect for the challenges that kidney disease presents. My mission is to educate and empower individuals and families affected by kidney disease.

I seek to educate society about the negative and positive sides of this disease. I strive to raise public and professional awareness of this disease and serve as an advocate for those who suffer from this disease. I will encourage those in the kidney community to never give up in their search to help their loved ones reach their full potential, funding efforts toward this end through appropriate research for finding a cure for both the physical and emotional damage from which so many affected by End-Stage Renal Disease suffer.

Ultimately I am here to inspire, educate, guide and assist you as you journey through the many stages and challenges of kidney disease and dialysis. This has been one of my callings and it has helped me to deal with what is going on with my body. I want everyone to understand the effects of end-stage renal disease and understand that there is hope, through dialysis so that no one has to suffer considerably. There is life after this kind of diagnosis and it can be a great one as long as you are educated about what is going on, what your options are, and you learn to establish a voice for yourself.

• Language: English
• Publisher: Jeff Parke
• Release date: Dec 20, 2016
• ISBN: 9781386799160

Book preview

Foreword

Good luck on your journey...

My name is Jeff Parke and I have been on dialysis for more than nine years. It has changed who I am and has given me a new lease on life. Many people I have talked to during the time that I have been sick have encouraged me, educated me, and guided me through the decisions that I make.

I meet people all the time that don’t understand that dialysis can be a great thing. It is one of the best things that have happened to me because it has allowed me to be me once again – and regain a considerable amount of my health and my life.

This booklet has been written for you, your family and your caregivers. I hope it helps you better understand kidney failure, dialysis and your treatment options. You are the most important part of your treatment team and by using the advice in this guide, you will become more knowledgeable about End Stage Renal Disease. The ultimate goal of this guide is to provide the highest standard of [non-medical] advice possible - so that you can obtain a deeper understanding and respect for the challenges that kidney disease presents. My mission is to educate and empower individuals and families affected by kidney disease.

I seek to educate society about the negative and positive sides of this disease. I strive to raise public and professional awareness of this disease and serve as an advocate for those who suffer with this disease. I will encourage those in the kidney community to never give up in their search to help their loved ones reach their full potential, funding efforts toward this end through appropriate research for finding a cure for both the physical and emotional damage from which so many affected by End Stage Renal Disease suffer.

Ultimately I am here to inspire, educate, guide and assist you as you journey through the many stages and challenges of kidney disease and dialysis. This has been one of my callings and it has helped me to deal with what is going on with my body. I want everyone to understand the effects of end-stage renal disease and understand that there is hope, through dialysis so that no one has to suffer considerably. There is life after this kind of diagnosis and it can be a great one as long as you are educated about what is going on, what your options are, and you learn to establish a voice for yourself.

Read each chapter slowly and if you do not understand a particular concept, ask your physician or health care team member for advice. Try to understand the key concept presented in each chapter and plan a course of action that will allow you to improve your measurable outcomes and increase you likelihood of living a longer and healthier life. Each of the chapters are designed to help you understand what is going on, what to expect, and it is something that can be shared with those within your life so they know the obstacles that you will be facing when you go on dialysis.

It is my personal mission to provide useful information that with safeguard the health of all people experiencing kidney disease and dialysis. My knowledge and conscience are dedicated to the fulfillment of this mission.

Dealing with the daily stress of dialysis is not an easy thing, but with the aid and assistance of your family, friends and health care team you too can be a survivor.

Final Note:

This guide was written to help individuals with kidney failure understand how to survive on dialysis. The creator of this book does not warrant or assume any legal liability or responsibility for the accuracy, completeness, or usefulness of any information contained in this book. The author of this book does not endorse or recommend any commercial products, processes, or services mentioned in this book. The views and opinions of the author expressed in this book do not necessarily state or reflect those of any health care professional team, kidney specialist, or a primary care physician.

It is not the author’s intention of this book to provide specific medical advice but rather to provide users with information to help the individual with kidney failure better understand their health issues and their diagnosis of kidney disease. Specific medical advice is not being provided. The author urges you to consult with a qualified physician for diagnosis and for answers to any personal questions that you may have.

Remember: Dialysis is not the end of your life. Instead, it is THE BEGINNING of a new life.

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There comes a time in everyone's life when we are forced to reflect on the meaning of our existence. At times, we feel victimized by the circumstances that present themselves on this journey through life. Somewhere in the drama of living we are faced with a crisis that turns our lives upside down. We seek answers to such troubling questions as: What went wrong? How could this happen? Why me?

One such crisis is a diagnosis of kidney failure and the realization that ongoing dialysis treatments will be necessary to maintain life. The day that the doctor tells you that your kidneys are failing, it can be a harsh dose of reality that is hard to swallow. I remember struggling with hearing the words and I have talked to many patients that have also struggled. It can be one of the hardest realities to face – and it is not something that you want to face alone.

We struggle and rage that life is unfair, that this setback was not part of our life plan. The foundation of our life has been shaken. What was stable, secure, and predictable is gone. Nothing feels right anymore. It can affect you as much as you allow it to. It can be a terrifying realization that your entire world is going to change. You are suddenly going to be faced with treatments and medications that are time-consuming, push your body harder than you ever thought was possible, and change the way you look at yourself and the world. However, it’s important to remember that it will CHANGE, not end.

Life is full of change. Change is essential and inevitable. Unfortunately, many people have the mistaken belief that they can control everything around them, but that is an illusion. Attempting to control other people, circumstances, and things will leave us feeling exhausted and isolated. It is to our detriment to hang on to the old when the new is knocking on the door.

Change can be very exciting. Embrace the spirit within yourself and open yourself to embracing the spirit in others. Get on with your life. Spark that inner light. It does not depend on outer circumstances. Take an inventory of current habits and start to make choices that will positively affect the outcome of any situation in your life.

It is common for negative thoughts and feelings to surface when a person has a setback. A health crisis forces us to examine life. These setbacks can cause us to lose touch with the good things about ourselves. A medical crisis can trigger fear leading to self-doubt and uncertainty. To overcome these setbacks we must put our hearts into that which we desire. Look at life from a different angle. There is a purpose and a plan for your life that takes into account your needs, wants, desires, talents and abilities. Every human being has problems. It is important to look beyond the problems to the solutions.

The first step is to deal with one issue at a time. Do you have a passion for something? Gardening? Stamp collecting? Art? Painting? Writing? Biking? Compose a list of activities that gave you pleasure prior to starting dialysis. Read articles about people who receive dialysis treatments yet continue to engage in life with gusto. Join a support group. Visit someone who is just starting dialysis and offer your experience, strength, and hope. Get yourself very familiar with what dialysis is. Speak to social workers, doctors, nurses and even other patients. After all, knowledge is power.

Although many medical advances have been made in the treatment of kidney disease, the emotional effects of kidney failure on patients and their families remain great because many areas of everyday living have to be changed.

This guide is to help find effective coping strategies for patients, families and caregivers.

What Do Your Kidneys Do?

Your kidneys are very important organs within your body. You have two of them and they are bean-shaped, seated above your bladder, close to your hips. They are found right below the rib cage and are approximately the size of your fist. They are connected to your bladder with ureters, which are tubes.

Your kidneys have a variety of different roles and it’s important to know what they actually do so you know how it will affect your quality of life if and when they fail.

The kidneys are responsible for filtering waste and extra water from your blood so that you can maintain optimum health and keep all of your vital organs functioning properly because they need clean blood.

They will also:

Make urine

Control the chemical balance of your body

Control blood pressure

Keep bones and teeth healthy

Help to make red blood cells

Your life depends on healthy kidney function!

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Figure 1: The Importance of Healthy Kidney Function

Now that you know about some of the basics regarding what your kidneys do, it’s important to know about some of the other aspects to these sophisticated organs. They may be small in stature, but you need them to survive. The good news is that you have two of them and it is possible to live with just one of them. If both of your kidneys fail, however, everything else is going to fail as well – and that’s because of their control in regards to the cleanliness of blood and overall chemical balance of the body.

Your kidneys are constantly intervening in processes within the body. They control various vital functions in addition to removing waste from the blood and helping you to eliminate them via urine. They are also going to help remove extra water and clean the blood.

The more you understand about the digestive system, the more you can understand how kidneys work. Food and drink will enter your stomach and then break down the nutrients. Solid waste is removed and then the nutrients will enter the bloodstream. From there, nutrients are used by the body for repair, energy, growth, and to maintain a variety of body functions. This process is going to