TAKING CHARGE
By Sharon Pahlka
I am a good news story. Thirty years ago I started dialysis. This morning I ran around Greenlake for an hour. But I learned to manage my kidney disease through a bad example.
You can be a good news story, too. You can have a long, productive, happy life. You can feel good, but you have to learn to take charge. Thats what I learned from my bad example. Her name was Betty.
I am so grateful to Betty. Betty was my hospital roommate when I was first diagnosed with kidney failure. Her body had rejected her kidney transplant because she had stopped taking her anti-rejection medicine. She did not like the side effects, such as weight gain, puffy moonface, and mood swings. Betty had a new boyfriend and wanted to be attractive. She probably thought she could get away with not taking her medicine. Bad choice. Instead, she ended up in the hospital again, back on a kidney machine/dialysis. From there it got worse.
First, a surgeon nicked an artery while removing the rejected kidney causing internal bleeding, and Betty had to be opened up again.
Next, Betty fell out of her high hospital bed and got a massive blood clot on her thigh.
After that, Betty continued to have a high temperature they couldnt explain. They opened her up again and found an infection in her small intestine. Part of the small intestine was removed. From then on she lost weight and had to stay in the hospital. One of her last visitors said that Betty had become very withdrawn and didnt want to see anyone. Betty was on dialysis and had covered herself with a white sheet and only peeked out from under the sheet to talk with her visitor. While on a 2 day home leave, Betty ended her life by taking an overdose of heroin.
Bettys life effected me a lot. I was 23 years old and knew nothing about kidneys. Betty was twenty five and was a veteran. I saw that my choices could determine how long I would live and how well. I took charge. I became proactive and involved in all the things that were happening to me. I questioned everything the doctors told me, asked questions of people on dialysis and who had transplants, and read as much as I could.
The truth is, I drove people crazy. But it has been proven that people who take an active role in their care do better and feel more in control. I took a fight for life attitude.
Two examples of my fight for life: After getting out of the hospital, I needed a fistula put in my arm so I could go on dialysis. A fistula is a vein that is used to connect a person to dialysis. Mine showed signs of not working right. The fistula doc told me not to worry. It would be fine. I didnt accept that answer. I insisted we check it out. I was given blood thinners, which corrected the problem. I am convinced that my persistence saved my fistula. Your fistula or graft is your lifeline on dialysis. Take charge!
My second example is the choice I made to dialyze 5 hours, 3 times a week rather than the average 3 or 4. Most people on dialysis want to rush the process of cleaning their kidneys in less time, not more. For me, it was gentler on my body, and I felt better. Now, years later, studies show that people who dialyze longer live significantly longer. That choice served me well. Take charge!
After 19 years on dialysis my body was tired and going downhill. I needed a transplant. I received one from my wonderful brother 9 years ago. I became healthier and was able to live a more normal life with energy. I was blessed with a 2nd chance for life. But I am still taking charge of that, too. I exercise daily. I lift weights, which I am convinced has prevented osteoporosis. I eat a healthy diet. I take my rejection drugs without fail. I have a quiet time each morning for myself, and I take regular time to value my friends and family. I pay attention to what is happening with my body and get involved right away when anything changes. Right now, I am working on getting my blood pressure down with diet and medications. Sometimes, it is hard to have to spend so much effort on my health, but I have made that commitment for life.
My message to other kidney patients is that each of you has something unique to offer the world. You cannot be replaced. Your life cannot be repeated.
I wish I could go back to my last visit with Betty, take her hand and convince her of the precious gift that life is and to make better choices for it. I cant do that. But I can stand in front of you today and say with passion and conviction: Take charge and CHOOSE LIFE!
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Sharon Pahlka has spent 19 years on hemodialysis and has been blessed with a kidney transplant from her brother these last 9 years. She graduated in Social Work from the University of Washington. She has spent many years speaking to the community, especially schools, educating them in caring for their kidneys and sharing her experience with kidney disease. In recent years she has become a life coach specializing in helping those with chonic health challenges and also caregivers who too need a life of their own. Visit her Web site at www.lifeisagift.com to learn more and receive a free coaching session.
Last updated on: February 22, 2008