How PD gave me more control over my life

Abstract

I have been a kidney patient all my life, but it was still a shock when, in 2003, my doctor told me that in a year I would be on dialysis or need a kidney transplant. During that year I discovered that not only were there several ways to undergo hemodialysis, there was another way to dialyze called peritoneal dialysis (PD). It didn't take long for me to realize that PD had advantages over hemodialysis that would make it more friendly to my lifestyle. I could do it almost anytime, anywhere, and fit it into my life rather than have it control my life. While on PD, I was able to travel with my wife on multi-day road trips, go on cruises, and fly out of state (including a 10-day trip to Hawaii). PD had fewer dietary restrictions, especially for fluid intake. It dialyzed 24/7, similar to my original kidneys. PD gave me more control over my life.

It was also very reassuring to know that help from my support staff was always only a phone call away. But, while nephrologists and clinic staff showed me how to undergo PD, and explained what medicines to take and when to take them, what I found I also needed was the advice and experiences of other patients who were living with PD every day. There were no support groups around at that time specific to PD, so my wife and I started one—Living Well with Kidney Disease—and it has been and continues to be very helpful for me and its members.

One lesson I learned early on was that, with this disease, time is not your friend. Regardless of the circumstances, if something doesn't feel right call your clinic or nephrologist as soon as possible. There can be serious consequences if you don't. I like to think of myself as captain of the good ship Richard's Health. I have a crew of doctors and nurses who will keep me on track for good health, but only if I tell them how I'm feeling in a timely manner.

I underwent PD for 22 months and was doing so well that for the first year I was very ambivalent about undergoing transplantation. I changed my mind after talking to a young woman at a transplant meeting who'd received a kidney four years prior, and I knew after talking with her that she was doing better health-wise than I was at the time.

When I received the call from my transplant coordinator she asked me a key question: “Richard, how are you?” I instantly knew that she had a kidney for me. Two hours later, at 9:15 pm, I was at the hospital, prepped and on the operating table. By 11:15 pm, I was off the table, and the kidney was working before they had me stapled up! The next morning, except for the tubes and wires, I would have been running up and down the hall. When my wife came in she exclaimed, “Boy, do you look good!”

On August 7 I will be 74, and two days later I will celebrate five years with my new kidney. I am so thankful that my donor, Trisha, was a caring person who listed herself as a donor in case the unthinkable happened. It did, and she donated both lungs, liver, both kidneys, and both corneas. I think of Trisha every day.