Reprinted with permission from the Fall 1996 number of "aakpRENALIFE" magazine, a publication of the American Association of Kidney Patients (http://www.aakp.org/). William Blackton is a founder, past president, and Life Member of AAKP. He is a former editor of "aakpRENALIFE." At the 1998 National Convention of the AAKP, he received the Josephine Berman Award for "...a patient or family member who has devoted much of his or her life through selfless and consistent efforts to the achievement of AAKP's goals and through such work has served as an endlessly inspiring example to others."
Dialysis saved my life in 1965, when I was 18. It's still keeping me going in 1996, at the age of 49. God knows how far it will take me, bit I'm still enjoying the ride.
Since I started on dialysis, I have gone to college, pursued a career in journalism, married (and divorced), moved from New York to Los Angeles to Washington and traveled wide and far.
I have known many courageous fellow dialysis patients and skilled, caring medical professionals.
I have had my share of setbacks as well as a lot of good luck. Through it all, dialysis has sustained me and I am thankful.
In the 1960s, hemodialysis was a little-known, experimental treatment. I don't think I even knew the word when my kidneys began to fail in the fall of 1964.
I was a freshman at Swarthmore College, taking advanced courses and playing on the varsity soccer team. My first symptoms were fatigue and high blood pressure that caused nosebleeds. I had no clue what was happening, although my parents and my doctor knew.
Kidney disease runs in my family, and my folks knew that I was at risk for renal failure since I showed protein in my urine at the age of five. Their fears were later confirmed by a kidney biopsy. But they didn't tell me, so I was blissfully unaware of the implications of what I was experiencing.
My doctor prescribed blood transfusions, and I gave up soccer. Still, I felt lousy and returned home to New York for tests in a hospital. That's when I was told I had Hereditary Interstitial Nephritis [now Alport syndrome -- Webmaster's note] and could become very sick.
I'll spare you the details of the next five months. I had more transfusions and some peritoneal dialysis. I went back to school after Christmas, but lasted only a few weeks. I entered the hospital again -- sicker and wiser -- and I had my first hemodialysis on March 19, 1965. Incidentally, that's also the day the swallows return to Capistrano.
Dialysis patients in those days were pioneers, or some would put it, unwilling volunteers in a process of trial and error. We and the medical staff had to learn by doing, since what we were doing hadn't been done before. Most of us suffered through anemia, hepatitis, bone problems, shunt infections, dialysis disequilibrium, muscle cramps and more.
I dialyzed at a unit in Kings County Hospital in Brooklyn twice a week for up to 16 hours at a time. Some ran for 20 hours. I would go for a treatment after my classes at Columbia College and return to the campus the next morning.
After graduating from Columbia in 1969 and undergoing an unsuccessful transplant in 1970, I moved to Los Angeles to live with my sister, and to go on home hemodialysis for the first time. I also began working as a news writer at a radio station. Dialyzing at home enabled me to take that job because I could adjust my treatment schedule.
Home dialysis appealed to me because I like to do everything myself -- setting up the machine, inserting the fistula needles and monitoring the treatment. I learned early that self-care is better care and prolongs life. I've been using the same fistula vessel for 27 years.
Throughout the '70s, I dialyzed myself three times a week while I worked as a radio reporter in Southern California. I began a regular exercise program and ran in a dozen 10-kilometer races -- not very fast, but I always finished.
In 1980, I packed up the kidney machine and moved to the Washington, DC area. I kept the same arrangement, dialyzing at home and working full-time in radio.
Every morning I would commute from my apartment in the suburbs to the capitol, where I would cover the news about Congress. On Monday, Wednesday and Friday, I would drive home in rush-hour traffic, set up the kidney machine, put in the needles and lie back for four hours while I ate, read, watched TV or talked on the telephone. I ordered medical supplies as needed and I went to a dialysis unit regularly for blood work. Of course, my routine was occasionally broken by the need for hospitalization. As the long-term effects of dialysis caught up with me, I needed carpal tunnel release surgery on both wrists. Meanwhile, my joints were getting stiffer from arthritis and amyloid deposits.
Another unsuccessful transplant in 1989 left me even stiffer and weaker, but I returned to home dialysis and I went back to work. At first I worked half-time, and then I gradually worked my way back to full-time. I got a disabled parking permit from the DMV so I could park right in front of the office.
Adjusting to new realities has been a continuing theme of my time on dialysis, as I'm sure it is for everyone. I try to focus on what I have left instead of what I have lost. Often, that's easier said than done.
In 1991, when I realized that I could not do dialysis at home by myself safely any more, I started getting my treatments at a unit. I also took on a new work schedule, from 10 p.m. to 8 a.m., four days a week. On Monday and Wednesday, I drove from work to the unit for dialysis and then back home again, going to sleep at 2 p.m. On Friday, one of my days off, I drove to the unit from home.
I was still able to play a big role in my dialysis at the unit. I continued to insert the needles, I closely monitored the machine during the treatment and I kept track of my blood chemistries. Unfortunately, this kind of self-care orientation in still restricted by some staff members who apparently aren't willing to relinquish control and don't realize that patients who involve themselves in the treatment feel better and live longer.
In early 1995, I eagerly went back to home dialysis, using an aide to do a lot of the work. I'm still working overnight as a news editor, and I'm writing these words at 2 a.m. during a break.
I've slowed down a lot since that March day in 1965 when I had my first dialysis. I might even retire soon after 25 years in the news business. The future is uncertain. I'll continue to take it one dialysis at a time.
November 1998, Additional Notes: Since I wrote the article, my life has not changed much. I'm still working full time at Voice of America and dialyzing at home. One change is that I've slowed down some and have to use a four-wheeled walker when I'm going any distance. I'm not a candidate for a transplant.