39 Years of hemodialysis

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 “Dialysis can give you a longer lifespan, but it can't give you a life.” All of us must work at creating our lives, regardless of our health conditions. Living productively and happily with kidney disease means finding the information you need to become involved in your treatment and care. I want to describe here what I have learned from my lifetime with end-stage renal disease (ESRD).

When I was just 2 years old, my grandfather, who was a medical doctor, noticed that my bladder was distended and that my urine had no smell. Doctors discovered Bilateral strictures on my ureters, a defect that was destroying my kidneys. I spent much of my childhood in and out of hospitals, undergoing several surgeries before my kidneys failed in 1971, when I was 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 of the supplies and equipment, including a reverse osmosis water system. From the start, strong family support helped me maintain an active lifestyle. I finished high school on time, went to college, and worked as a respiratory therapist for 14 years. I then earned a master's degree in counseling psychology and worked in that field until I retired. I don't feel as if 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 from my two brothers and two sisters.

Soon after I began feeling better, my father gave me an ultimatum. I would have to discontinue home dialysis and go to a treatment center if I continued to be dangerously irresponsible. That little talk wasn't magic, but I have never again gotten drunk or overloaded myself with fluids. Later, in the mid-1980 s, I decided to switch to in-center dialysis. I now go to the center three days a week for dialysis. I have not met any other people who have been on dialysis as many years as I have without interruption.

Over the years, I learned how to find the information I needed to play an active role in my own treatment, which gave me the confidence to deal with ESRD and dialysis effectively. I learned a lot just by talking with my doctors. Even now, before my appointments I write down a list of questions. 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, including the Dialysis Support e-mail list. I have had a lot of problems with hyperparathyroidism, but I have realized that after 39 years, some problems just don't go away.

In my almost 40 years 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 continue to work until I retired. The quality of dialysis treatment and care has improved greatly over time. People on dialysis today don't have to make the same mistakes I did. The new information, if used responsibly, can make life fulfilling for someone on dialysis. 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 “Renal 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 ESRD and dialysis from looming so large in your life.