By Joseph D. White

It was 1961, the dawning of the space age and America's race to the moon, and the beginning of the yet to be noticed American involvement in Vietnam.  I was 17 and eager to play a part in our race to the moon. I enrolled at Purdue University where I would study engineering and join the Reserve Officers Training Program (ROTC). I had my life pretty well figured out, I thought.

The term, proteinuria, was new to me. It appeared in the results of my physical exam for the ROTC program in 1962. Subsequent tests showed I had glomerulonephritis, which many years later would be determined as probably hereditary. I was told the disease was progressive, but progression could be slowed with a low salt diet and I could continue my studies and normal activities. I began eating low salt meals at the university health center where there was a special program for diabetics. Other than the dietary restrictions, my college life was normal. I had no symptoms until I developed hypertension in 1963. Medicines controlled the hypertension, but my kidney function continued to decrease. I was no longer eligible for ROTC. Fatigue and itching began in the summer of 1964, but I was determined to finish my last year of college. (At 20 years of age, I was infallible and indestructible in my own mind!) I made it through my first semester exams and drove home to Geneva, NY in January 1965.

I was very uremic and was taken to Strong Memorial Hospital in Rochester, NY where I was given continuous peritoneal dialysis treatments. These treatments were not enough to reduce my uremia and an external arteriovenous shunt was placed on my forearm to provide a connection to the hemodialysis machine. I was dialyzed for upwards of 12 hours every other day on a flatbed (Kiil) machine that utilized my heart as its pump. This process improved my condition, but it could not be a long-term workable solution. The doctors in Rochester referred my parents to the Peter Bent Brigham Hospital in Boston, for a possible transplant. Fortunately, my father was an acceptable donor and I received his kidney in March 1965.  I was very fortunate. The chance of success at that time was closer to 10 percent than the 90 percent that is the case today. There was no Medicare coverage to pay for the transplant. Thankfully, the hospital and some insurance money from my father's company covered the costs.

My good fortune continued as I was able to return to college one year after I had entered the hospital in Rochester. I graduated one year later with my engineering degree and began my career developing radar systems for the military. Soon thereafter, I married my wonderful wife, quit my job and returned to college to earn a masters degree. I received my degree one month after the first moon landing. Over the next three years, we were blessed with two daughters. Many years later, our youngest daughter would develop kidney disease, most likely the same disease I had. As the Vietnam War was coming to an end, I left the electronics company where I had been working and joined a computer services company. I continued to enjoy good health and a wonderful life, until 1979.

In the fall of 1979, a biopsy of a nickel sized mole showed I had a well-developed malignant melanoma. There was a substantial risk that the melanoma may have spread. Within a week after this devastating discovery I was in Memorial Sloan-Kettering Cancer Center awaiting surgery to remove the tissue around the mole on my upper arm and the lymph nodes in my armpit when I came down with an infection. The surgery was postponed for two weeks. Valuable time was lost. During this time, my wife in addition to worrying about me had to help our two daughters, ages 9 and 7, understand the situation and risks.

The surgery was successful. Although the melanoma had reached some of the lymph nodes, the doctors' prognosis was cautiously optimistic. However, they were not optimistic about my kidney. To minimize the risks of additional cancer, I would have to stop taking my immunosuppression medicines, Imuran and Prednisone. I could expect my kidney would be rejected. It was a period of emotional highs and lows for the whole family. I returned to work about two weeks after the surgery. My kidney continued to function normally despite no immunosuppression therapy. Family life returned to normal with the girls' activities, work and vacations.

It was the fall of 1982 when the signs of rejection appeared. I was hospitalized for anti-rejection treatments that did slow the rejection, but less than half of the kidney function remained. In the spring of 1983, when I was about a year away from needing dialysis, I met with the dialysis staff at Holy Name Hospital in New Jersey to discuss treatment options. They were very supportive and informative. They arranged for me to meet with both peritoneal and hemodialysis patients.

A rapid series of medical problems began in the fall of 1983. A perforated colon required emergency surgery and the creation of a colostomy. Peritoneal dialysis was no longer an option for me. A fistula for hemodialysis was created in January 1984. My colostomy was removed in February 1984, but I remained hospitalized for four weeks until my small bowel obstruction was cleared. In March 1984, I began dialyzing at Holy Name Hospital. Over the next four years, I experienced a variety of medical problems including: three blood infections, multiple bone fractures, hemolyzed blood, reduced ability to balance, bladder tumors, Hepatitis C from transfusions (my base hematocrit was 15), two clotted fistulas, a second colon perforation and two more bowel obstructions. During this period we, as a family, went about living as normal a life as possible. I continued to work except when hospitalized or recuperating and we took vacations in places where I could dialyze.

Also during this period two important medicines were developed, Cyclosporine and Epogen. Each was very important to me. Epogen eliminated my need for transfusions that were still risky (Hepatitis C and AIDS).  Cyclosporine allowed me to be considered for a transplant. With my melanoma history, Imuran was too risky but Cyclosporine was not.

A living related kidney was not possible in my case, so I was put on the waiting list for a cadaver kidney. I carried a beeper that remained silent for months. When it finally beeped, it was a wrong number. Ultimately, it was the right number, but the wrong time. A kidney was available, but I had a respiratory infection. The next call came in May 1988. I was dialyzing at home and eating dinner. Just as the phone rang, the raging storm outside knocked out our power. As we were struggling in the dark with flashlights to return my blood and disconnect me from the machine, my daughter answered the phone. I told her to tell whoever it was that we were busy. She then said, "Dad, they have a kidney for you." We completed the disconnection and I was taken to Columbia Presbyterian Medical Center in New York City to receive the transplant.

The kidney came from an 11-year-old girl in San Francisco. It was a six antigen match! There was only one glitch. A nephrostomy was needed to allow a small leak in the ureter to heal. After five months, the nephrostomy was removed. In August 1989, a small growth on my cheek was biopsied and it was melanoma. Ten days later, I had surgery to remove the growth and all adjacent glands in the face and neck. Since then my medical status has been ordinary, except for the typical problems of advancing age that I am happy to have and life has been very good.

Joseph D. White is the immediate past president of AAKP and continues to serve as a member of the AAKP Board of Directors. He is also an AAKP Life Member.

This article originally appeared aakpRENALIFE, Vol. 16, No. 5, March 2001.

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