By David O. Stapel

It was a typical warm Southern California summer afternoon in 1983, as I walked across the parking lot of Kaiser Permanente Medical Center in Harbor City, Cali. I had just learned my kidneys were failing, and knew my life had changed forever.

A series of kidney infections in the third grade led to that summer day in the parking lot. The diagnosis was pyelonephritis. The underlying cause of my kidney infections was child abuse. As a small boy, I was often subjected to severe beatings from a stepfather for my “poor aim” in the bathroom. To compensate and avoid punishment, I would delay my bathroom visits, which led to a series of kidney infections and to the eventual scarring of both kidneys.

Earlier that summer, I began having the symptoms of kidney failure. I often felt fatigued before noon, experienced a loss of appetite, had constant itching, strange tastes in my mouth, restless legs, difficulty sleeping and I was finding it increasingly difficult to concentrate. It was not hard to sense something was wrong. Despite not seeing my doctor in a while, I instinctively knew my kidneys were failing.

My chemistries were completely “out of whack” and I was progressively feeling worse, I continued to work full time. Yet with each day’s mounting fatigue, it was becoming increasingly difficult. I would get up in the morning, go to work and come home totally fatigued. I had to push myself to do even routine tasks.

At the age of 35, I was facing kidney failure and some consequential medical decisions. My only realistic choice of treatment was dialysis. I figured by choosing hemodialysis as my treatment option, it would buy me additional time for making a decision about a kidney transplant.

Participating in the decision making process with my doctor helped to ease my anxiety. Yet the idea of being tethered to a machine three times per week for four hours, to sustain my life, seemed strange and daunting. I could hardly imagine hemodialysis as a long term, consistent course of treatment.

Back in the 80s, there were fewer educational resources for patients. If you needed information about kidney disease and dialysis you were told to go to the public library! There were few patient resources. I knew instinctively I had to learn as much as I could in order to survive.

Kidney patients who are knowledgeable live longer! My doctor insisted on an AV fistula, and I am glad he did! (He didn’t offer any other options). AV fistulas are absolutely the best hemodialysis access, offering the most efficient and durable method for dialysis. Most patients in the 80s had AV fistulas. (For the entire 26 years I have been on dialysis, I have had the same AV fistula and it has never failed. This is after an estimated 8100 needle sticks!)

I still had doubts, but I remember reluctantly agreeing “to try” hemodialysis for the first time! I remember my first treatment. It was not as traumatic as I had anticipated. I was more amazed, than frightened, and the part I remembered the most, was how good I felt after my first treatment.

When I began dialysis, I made the decision to continue working full time, and I am glad I did! It wasn’t easy – I often had to push myself. More importantly, it kept me active and involved, giving me a sense of normalcy in my life at a critical time. I continued to work full and part time for the next 17 years. (I can still remember the frustration of having to fight the infamous Southern California rush hour traffic to make it to my dialysis center on time.)

From the beginning, there was no plan to remain on dialysis for any length of time – certainly not for 26 years! I stayed on dialysis because I made the adjustment, it worked for me and I could continue on with my life. (Since 1983, I have received some 4,056 treatments of about four hours each, or a total of approximately 16,224 hours of dialysis!)

I spend my hours on dialysis reading, watching television, talking with other patients, teasing and torturing the staff! I have also enjoyed listening to the Beatles and Rolling Stones on my ancient Walkman—often turning up the volume loud enough to drown out the sound of the dialysis machines around me!
Today, hemodialysis is just a routine part of my life. Admittedly, it is not always easy. Sometimes I have to literally “drag myself” to the treatments! Overall, I don’t find it particularly pleasant or unpleasant. Again, you make the adjustment and go on with your life! I may not always enjoy the process, but I sure enjoy the end result.

Life with kidney disease and hemodialysis is different. At the same time it can be very good. You can still have a life worth living, with purpose and meaning. You have to keep a positive attitude, learn all you can and take the necessary steps to maintain your health. You must learn as much as you can about your chemistries, your mode of treatment and all the terminology that goes with it.

As a kidney patient, you are often surrounded by medical people and other patients. That is why it is so important to have contact with “regular healthy individuals.” On the days I go for my dialysis, I am a patient. On the days in between, I tell myself I am “healthy and normal” like everyone else. I blend in with the crowd as I go about my daily activities. I always felt the “most normal” when I would travel. Because I was a compliant patient, my doctor allowed me to skip a treatment and travel over extended weekends. One of my most memorable trips was flying from California to the Kennedy Space Center in Florida to witness the launch of the space shuttle, Atlantis.

When we become patients, our lives change forever – often turning upside down. That is why it is so important to keep activities in our lives that give us purpose, pleasure and normalcy. I realize activity is not always easy for everyone. The feelings of well being and confidence, and knowing a part of your life remains “normal” is worth it!

This is from a favorite Yiddish Proverb: “You can’t control the wind, but you can adjust your sails.”

David O. Stapel is a hemodialysis patient and former member of the AAKP Board of Directors. He can be reached at dostapel@aol.com.

This article originally appeared in the September 2009 issue of aakpRENALIFE.

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