Being on dialysis not only affects you, but also your spouse, children, family and friends. Everyone is going through what you are experiencing. Everyone is on an emotional rollercoaster. Everyone is asking why? Everyone is wondering about the future because of the horror stories they have heard.
Even though some of the stories may be true, it does not mean that your life will be another scene in the next chapter of the dialysis horror stories. You can choose not to focus on the negative things that you've heard. Your experience on dialysis is all up to you. You must decide to live while on dialysis and not just exist on dialysis. Dialysis is a lifeline. It is not your life. Dialysis does not have you. You have dialysis. You have more control while on dialysis than you think.
When dialysis has you, you are controlled by dialysis. People who are controlled by dialysis go to the clinic 3 times a week for 4 plus hours each run. When they get home from dialysis, they eat and rest. Sadly, it is the same eat and rest cycle on the days off in-between dialysis. This cycle is causing your body to deteriorate and gives the excuse: "I'm tired because I'm on dialysis."
People who are controlled by dialysis wait on the doctor to tell them what is wrong or what they need to do for better dialysis runs and better lab readings. The ignorance of not knowing your body can cause you to always remain in the doctor's office or in the emergency room.
People who are controlled by dialysis make life decisions in fear of dialysis. "What if? What about this? I'm afraid because of..." which causes them to end up missing out on enjoying life.
To take control of your life on dialysis, you must change your perspective. You can live a quality level of life while on dialysis, but you must decide not to allow it to control your life. Tell yourself, "Dialysis is not my life."
This book will include a personal account of my experiences on dialysis from the beginning. As you read, you may relate to the different stages of dialysis which may or may not be similar to your own personal journey. This book is aimed to help you control your response to being on dialysis and give you the courage to get your life back. Just because you are on dialysis does not mean you should allow it to control your life!
In early 2000, I was diagnosed with Polycystic Kidney Disease. PKD is a hereditary condition where cysts grow on your kidneys and slowly cause them to fail. In December of 2011, I was told to make a choice to begin dialysis treatments. One option was to begin hemodialysis. This is where a fistula (an artery linked to a vein) is created in the arm or leg by a surgeon. You are placed on machine for four hours to clean the blood, three non-consecutive days a week. The other option was peritoneal dialysis (PD), where a catheter is placed in the abdomen to allow fluid to be placed into the peritoneal lining of the abdomen in 2hr - 4hr increments for 24hrs to clean the blood.
On February 9, 2012, I started PD. I was terrified, because my grandmother, aunt, sister, and cousin all had polycystic kidney disease and they all died. Now I had been diagnosed with the same disease on the same machines and facing the same fate. It felt like I was looking down the barrel of a loaded gun and waiting for a bullet with my name on it to take me out of this world.
All I could think was I'm going to die, and I'm not ready. I was forty years old and there was so much I still hadn't accomplished. My life was over. There would be no more time with my wife and son. My wife was going to be a widow and my son was going to grow up without a father. My father was going to bury another child and my brothers and sister were going to lose another sibling. They all were going to watch me wither away and die. This was out of my control. When you can't control what is happening, you must decide to control the way you respond to what is happening. That is where your power is. I couldn't control being on dialysis, but I could control my response. Dialysis did not have me; I had dialysis, and I was determined it would not control my life. The negative thinking of all that I would leave behind in death became the drive for me to live.