Planning for a Kidney Transplant

IN THE SPRING OF 1992, 5 YEARS AFter learning that I had polycystic kidney disease, I met with the transplant team at the University of Minnesota to discuss my illness and future treatment options. I was 46 years old. At 25% to 30% of normal, my renal function was still more than adequate to sustain life (serum creatinine level, 256.4 μmol/L [2.9 mg/dL]), but I wanted to make plans well in advance of reaching end-stage renal failure. When I explained to my wife, Catherine, that a kidney could be transplanted from a living donor who was not a blood relative, she volunteered to be tested. We soon learned that we were compatible in a way that went beyond our shared fondness for Mideastern food and Midwestern folksiness. Knowing that we could share vital organs, we decided not to wait until the last possible moment to act, but would time the transplant based on quality-of-life issues. I was already feeling the early effects of uremia (fatigue, anorexia, sleep disturbance) and was bothered by abdominal pain from enlarged kidneys. If my symptoms became sufficiently disabling, Catherine and I were prepared to undergo a “preemptive” transplant, that is, to act before I required dialysis. We understood the risks of transplantation to the donor and recipient and believed that at some point those risks were worth taking. My doctors agreed that, since I was the best judge of how I felt and since Catherine was agreeable to an early transplant, the timing decision should ultimately be up to me. Over the next year my symptoms worsened, and by early 1993 Catherine and I realized that I had crossed the boundary. I no longer had the energy to enjoy anything. It was time for the transplant. My doctors were aghast! How could I consider a transplant at this stage of my illness? At 15% to 20% of normal (serum creatinine level, 380.1 μmol/L [4.3 mg/dL]), my renal function was still well above the standard dialysis threshold of about 10%. What was my problem? While they had agreed that Catherine and I should make the decision, they apparently had not expected us to deviate substantially from standard practice. Perhaps we would choose to act a few months earlier than usual, but certainly not a year or more before I had reached the 10% mark. They tried earnestly to dissuade me, explaining that my illness might progress more slowly than anticipated and that I should not risk complications or graft failure sooner than necessary. The transplant team abided by our wishes, but they continued to protest until the very day of the operation. Their uneasiness caused me great anxiety. What if they were right? Was I being irrational? Having been trained in the decision sciences, I tried to assuage my anxiety by doing what I knew best. I built a decision tree. Shortly before the transplant I sketched out a decision analysis that suggested that my desire for early transplantation was not irrational in view of the potential gain relative to the risk. Unfortunately, I was too debilitated at the time to undertake a full analysis and felt that I could not share the crude preliminary effort with my doctors. It seemed clear to me that I enjoyed a candid, trusting relationship with my physicians. Why, then, were they so surprised and perplexed by my request? To address that question, I will first summarize the full analysis that I completed after my recuperation, then reflect on how divergent perspectives can impede communication between patients and physicians and how formal decision tools might facilitate shared decision making.