By Shirley Fester, RN

 I was diagnosed with kidney disease over six years ago. It has changed my life in many ways but it is only a part of my life. Kidney disease does not control me now and it never will. I learned to adjust to the new circumstances and moved forward with the knowledge that I would have to make adjustments in some areas.

I travel with my husband a great deal, preferring new and different destinations. In fact, our travels increased after my kidney disease diagnosis. This happened for two reasons: one was our two daughters had both gone off to college, allowing us more time and freedom, and also because of my awareness that one day I might be on dialysis and there was no better time than today to get going.

I also read a lot of books, both fiction and nonfiction. I have been told that I am a book addict and used to have a fear that I might run out of reading material. With age, I have discovered that this could never happen. My house is filled with books, most of which I haven't had time to read.

Volunteering also takes up much of my time. In addition to serving on the board of directors for the American Association of Kidney Patients, I am also on the board for the Arizona Osteoporosis Coalition, an education and awareness organization in its infancy. I also volunteer for several civic groups and my strongest passion is devoted to environmental preservation and quality of life issues.

In 1995, a nephrologist (kidney doctor) discovered that I had kidney disease after months with an undiagnosed illness. My situation was different from some people because I felt ill. Many have absolutely no symptoms until their kidneys have failed. I knew I was sick and was scared and worried because no one could figure out why.

When I finally learned it was a kidney problem called glomerulonephritis, I immediately searched for any information I could find. The news I found was not very good and even the treatment plans were uncertain. Data was somewhat skimpy concerning treatments and it appeared that most people with this condition eventually needed dialysis, sometimes very quickly.  

I knew I could not afford the luxury of being sick any longer and had to work with my nephrologist to receive the treatment that would give me the best chance of halting the disease. I began going to a hospital to receive IV doses of steroids, followed soon by a chemotherapeutic agent.

During each treatment, I listened to the rock musical "Tommy" on my CD player. Why? Because I had seen this show on Broadway and found the music to be sad, hopeful, driving and frantic - the same emotions I was having each day. Somehow, I felt connected to this music and found it necessary to carry me through each treatment.

Dealing with the steroids was hard for me, though some people have worse experiences than mine. I think the "chipmunk face" and thinning hair from my treatments were particularly difficult. I kept telling myself that it was worth the benefits of the treatment.

I know that my whole family was worried about the outcome of my treatment. I remember feeling sorry that my situation had such an impact on them and caused them worry. I learned about the importance of a strong support system at this time. I still have messages that my family left for me on my answering machine, even though it has been more than six years!

Of course, I have a lot more compassion for seriously ill people today. I have learned all about my kidneys and though I am a registered nurse, I found my kidney education to be lacking once I was diagnosed. I have spent hours researching information on the kidneys and feel quite well versed on this topic now.

I have heard doctors say it is the patients who will not stop asking questions who do the best and I agree that is true. Of course, some doctors are annoyed by that approach. I would never have a doctor who would not answer my questions. My advice to others would be to learn everything you can about your situation and then don't stop learning. I cannot believe how information has changed in the six years I have had kidney disease. There are new medications, different strategies, more studies completed - things are constantly changing.

Having kidney disease is not easy. I have to carry my medications with me when I travel and count out all the pills I need for hypertension, lipids problems, metabolic acidosis and other things. I remember when I took no medications!

I try not to overdose on foods high in protein. This strategy is often debated for those patients with chronic kidney disease. The risk is becoming protein deprived and losing good nutritional status. This would make the transition to dialysis more difficult because in dialysis it is necessary to have a high amount of protein daily. Some chronic kidney disease patients have to watch their sodium (salt) intake also.

I have always had in the back of my mind the prospect of dialysis or transplantation. While this was once frightening to me, I have since met many patients who are on dialysis or who have transplants, and they give me a run for my money in spunk. Kidney disease does not mean you have to be a sick person! I have relaxed with my situation and feel good about managing my care. If I do everything I can to stay as healthy as possible, I am doing the right thing.

AAKP has been so helpful to me. I think it is often true that when a person develops a new situation, they wish to find others who share their situation. I found them at AAKP. How relieved I was to learn that kidney disease was not the end of the world. The members are bright, active, smart and helpful. The materials that AAKP sent me when I joined were enough to jump-start my quest for more information. I became involved with AAKP as a board member to help maintain these services for others. Kidney disease might be a hard thing to accept. But with AAKP in front of you to lead the way, it can be a smoother journey.

Shirley Fester is a registered nurse and chronic kidney disease patient living in Phoenix, Arizona. She serves as a member of the AAKP Board of Directors.

This article originally appeared in the August 2002 issue of Kidney Beginnings: The Magazine, Vol. 1, No. 1.

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