By Bruce Schultz
I have been on hemodialysis for 39 years without interruption. In that time, I have learned a lot about how to live well. One of my favorite mantras is that dialysis can give you a longer lifespan, but it can't give you a life. Living productively and happily with chronic kidney disease means finding the information you need to become involved in your treatment and care. The National Kidney Foundation's many online resources are a great place to start.
When I was two years old, my grandfather, who was a doctor, saw that something was wrong. He noticed swelling in my bladder and that my urine had no smell. It was discovered I had blockage in my ureters that was destroying my kidneys. I spent much of my childhood in and out of hospitals, undergoing several surgeries before my kidneys failed completely in 1971 at age 13.
In the early days of dialysis, I was one of a fortunate few selected for this life-saving treatment. There were no dialysis centers in my area, so my dad and I went to Miami to train for home hemodialysis. My mother got the house ready by making space for all the supplies and equipment, and having a reverse osmosis water system installed.
From the start, strong family support helped me maintain an active lifestyle. I finished high school on time and went to college. After serving as a respiratory therapist for 14 years, I received my master's degree in counseling psychology and worked in that field until I retired. I don't feel like I've missed a thing. I was just as active as any kid on the block. My parents made sure they didn't treat me any differently than my two brothers and two sisters.
Adjusting to Dialysis
For me, the road to success was not without obstacles. When I first started on dialysis, there were no support groups, no renal dietitians or other people on dialysis close by.
There were other challenges, as well. As a teenager, I wasn't very compliant. I didn't follow the diet and fluid restrictions very closely and I wasn't good about taking my medications. The turning point came in my early 20s after a long night out with my friends. I think we hit every bar on the east coast of Florida. I didn't get home until 4 AM. My father immediately took charge. He knew I was in trouble, so he put me on the machine right away. It took another two treatments before I felt human again.
Soon after I began feeling better, I was met with an ultimatum from my father. He told me he couldn't see continuing home treatment if this was how I was going to cope as a person on dialysis. I would have to get my treatments in-center if I continued being dangerously irresponsible. That little talk wasn't magic, but I have never overloaded myself with fluids since.
Over the years, I learned to find the information I needed to take an active role in my own treatment, which gave me the confidence and improved attitude to deal with kidney failure and dialysis effectively.
I've learned a lot just by talking with my doctors. Even now before my appointments, I write a list of questions about my condition. Experience is also a great teacher if you are willing to listen and not try to reinvent the wheel. I have made use of the Internet and websites such as kidney.org to find others with similar experiences.
In my nearly four decades on dialysis, I have seen big improvements in the quality and quantity of information available to people with kidney disease. This information has helped me become involved in self-care, maintain a regular exercise program and to work until I retired.
The quality of the dialysis treatment and care has improved greatly over time. People on dialysis today don't have to make the same mistakes I did. The quality of information, if used responsibly, can make life as a person on dialysis quite fulfilling.
I hope this hard fought information will do the same for other kidney failure patients. Don't just sit back and let things happen. Take the time to educate yourself and get involved in taking the mystery out of kidney failure.
The strategy is simple. Develop good relationships with your healthcare team and learn to use resources like the Internet. Follow the rules: stick close to the diet and fluid restrictions, take your medications as prescribed, follow the dialysis as scheduled, don't skip or shorten dialysis time and exercise regularly and sensibly.
The benefits are well worth the effort. Knowledge and compliance will keep kidney failure and dialysis from looming so large in your life.