Narrative Inquiry in Bioethics

As one of three siblings who all inherited an unfortunate gene from our mother, I was born with polycystic kidney disease (PKD). None of us knew of this, however, until later middle age, and my mother not until she was 76. I was the last sibling diagnosed at the age of 56. My brothers had been diagnosed some years before and jokingly started to look at me as a universal donor. Since I had a 50-50 chance of having PKD and with a mother who was one of eight children with none of her siblings known to have the disease, I had not felt an urgency to be tested. Besides, I had no signs or symptoms. But now there was a reason. I made an appointment for a renal ultrasound and while having the procedure, I tipped the screen so that I could see the results. Although the technician was not happy with this, I was repaid with the view of my kidneys looking full of bubbles. Yes, our family was three for three in the genetic game of roulette.

I knew immediately how I was going to navigate this health issue. As an adult nurse practitioner I had a very good understanding of what was to come. I knew my blood type “O” was the most common and would mean the longest wait for a deceased donor transplant, at least five years if I were lucky and only after enduring several years of progressing renal failure. In addition, I had cared for dialysis patients and watched my mother endure with difficulty both peritoneal and hemodialysis prior to her death a year before my diagnosis. Knowing I would not choose dialysis left me hoping for a miracle of a living donor or, more realistically, managing my disease as best I could until I died.

The next step was managing PKD symptoms and issues as my kidneys continued to fail. One of the errors in my thinking during this time turned out to be that because I had two brothers who had the same disease and were ahead of me in their disease progression, I could follow their lead. It turned out that we manifested our disease very differently. My younger brother, who was diagnosed first, had to deal with significant pain from persistent cyst ruptures, monthly, biweekly then weekly. This continued even after his transplant until he had his native kidneys removed. The other two of us did not have to deal with cyst ruptures. Additionally, anemia was no problem for my younger brother but was for us older siblings. Significant fatigue and weariness were a problem for both of my brothers but not for me.

And so it went, as we compared our blood test results, that the idea of a living donor entered the conversation. I knew this would be a problem for me because how do you ask people to consider being a donor? I had difficulty asking friends for a ride to the airport. This is where the grace and kindness of others and divine intervention enter [End Page 107] our story—word about our medical dilemma spread through the visibility of my younger brother, a minister in New England.

Fortunately for me, my much beloved younger brother had dozens of people who wanted to be his donor. About 12 of these potential donors were actually tested before finding a match. One of his unmatched donors became the donor for my older brother (our first family transplant). Two years later, my other brother received his transplant. Three years later, after being told he was not a good match for my brother, this dear man came forward to be a possible donor for me. Hence, I got my transplant from an unused donor from my younger brother’s group. Overall, we had living donors from three different churches located within an hour of each other in New England. I even lucked out and acquired the minister of one of the churches as my donor. All three of us received kidneys over five years from living donors who did not know my older brother...