When my friends and coworkers learned that I planned to give a kidney to my youngest sister, they naturally were interested in the story behind my decision. It’ not a short story to tell, but I believe that telling it might help others consider giving the gift of life, either as a living donor or at the end of their own life.
I was seven years old that Easter Sunday in 1969 when my parents announced that a new baby was on the way. There were four of us kids already; my two sisters were ages six and ten, my brother was nine. My Catholic parents chose Easter–the day Christ was reborn–as an appropriate day to announce the impending birth. The fact that the pregnancy was unplanned was never mentioned; being good practicing Catholics, they simply accepted God’s plan.
A few months later we woke on an August morning to find Mary, our grandmotherly neighbor, preparing our breakfast. We had a new sister, named Roberta after my father. The four of us older children doted and fussed over our baby sister, encouraging her to talk and sing, to count and clap; and as the months passed each of us claimed credit for her precociousness.
Bobbi talked early, she walked early, she impressed everyone she met with her extensive vocabulary and advanced reading and writing skills. We were all proud of her and loved her so much. But by the time she started kindergarten, we were all in middle or high school. As we older kids became more involved with extra-curricular activities, after-school jobs, and adolescent romances, Bobbi was developing her own circle of friends–swinging on the playground and skinning knees while we prepared for college, careers, travel, marriage, and parenthood. Not to be left out, Bobbi could toggle easily between childish games and mature conversations, holding her own on most topics.
Her maturity was most evident to me the summer Bobbi was diagnosed with Juvenile (Type I) Diabetes at age 12, and it scared me a lot more than it seemed to scare her. She was so very brave, learning to inject herself with insulin by practicing on the firm flesh of an orange. Watching her I felt certain that I could not have dealt with it had it been me. For a few years she managed well, until Bobbi entered the difficult teen phase and began struggling with the usual issues of parental authority and peer pressure. An increasingly rebellious teen, Bobbi’s self-care became casual and careless and on at least one occasion she required hospitalization. My parents couldn’t agree on a consistent approach and alternated between “tough love” and coddling; it nearly destroyed their marriage. We were all so very relieved a few years later as she matured and resumed routine monitoring of her blood sugar and insulin injections.
Eight years apart in age, Bobbi and I grew emotionally closer as adults. Unfortunately, we shared an unhealthy attraction to dysfunctional relationships. On the bright side, we were always there for each other at the darkest hours of those tumultuous romances–trusting, knowing and understanding without blame. She was there for me when I announced my first pregnancy to our parents. Nearly 30 years old, I none-the-less sought her support, knowing our father wouldn’t approve of my biracial baby. Dad came around quickly, and was thrilled when I gave birth to his first granddaughter. Diagnosed with cancer when Patience was only a few months old, he pampered her and fussed over her and put on a brave face, then died within weeks. Bobbi wears his class ring and laments not having enough time with the man who didn’t know how to relate to his own children until they were adults; a regret we all share.
Bobbi is Godmother to my daughter, Patience. The two of them share a special bond even today, eighteen years later. Bobbi is equally loving and supportive of my other two children, and has functioned in many ways as my co-parent to all three, their own father having abandoned his parental responsibilities amidst his bi-polar struggles.
In 2000, we learned that diabetes had wreaked havoc on Bobbi’s kidneys. She was nearing kidney failure and would require dialysis within a year. She fretted about qualifying for a kidney transplant, as she was too ill to work and couldn’t afford the dental work and other medical procedures requiring resolution prior to an organ transplant. We older sisters established a fund in her name and began recruiting donations and labor for a holiday craft bazaar, a garage sale, a pancake breakfast, and a country dance. We raised more than $20,000, enabling Bobbi to undergo all required procedures. She began dialysis and was placed on the national waiting list not only for a kidney but also for pancreas, an organ which could only come from a deceased donor.
In the summer of 2002, Bobbi received the long-awaited phone call: a match was found, from an anonymous donor in the Midwest. Within hours Bobbi was on a plane to the University of Chicago where she underwent a successful double-organ transplant on August 1, 2002. When she awoke from surgery, both organs were functioning well and for the first time in twenty years Bobbi was no longer dependant on insulin injections thanks to the new pancreas. After three months of medical monitoring, Bobbi was allowed to return to Portland where a crowd of 50 friends and relatives welcomed her at the airport with large banners, balloons, and cheers heard up and down the concourse.
Unfortunately, the transplanted pancreas failed that December and Bobbi was once again dependent on insulin injections, a condition which taxed her newly transplanted kidney. Fortunately, she was the recipient of a second donated pancreas in April 2004, a good match that is still functioning well today. In 2005, however, the kidney that Bobbi received in 2002 began showing signs of failure. Well before she needed to resume dialysis, a friend donated her kidney to Bobbi. We were in awe of Marilyn’s generosity. If her husband, siblings, and grown children didn’t fully support her decision, they never expressed an ounce of resentment toward our family despite the fears they surely must have harbored.
I can’t speak for my siblings, but I was nearly overcome with guilty relief. Marilyn spared me the anguish of making–or not making–the same offer. I had three school-aged children and was only beginning to get back on my feet, with the help of family, friends, and community after a turbulent divorce. I was at a new job, struggling to pay off some bills and avoid foreclosure on my house.
As we all feasted on Thanksgiving Day 2005, Marilyn’s meal was limited to jello and clear liquids. She drank the prescribed phosphasoda in preparation for the next day’s transplant and downplayed her benevolence to local news reporters as they filmed her family dining on traditional turkey with all the trimmings. On November 25, 2005, the surgeon emerged optimistic from the completed transplant. Our family was so grateful to Marilyn for her selfless gift of life and we all looked forward to a healthy, happy Christmas season that year and for the years ahead.
Alas, our Christmas celebration was not what we’d planned. Only twenty-five days after transplant, on December 20, 2005, Bobbi was rushed to the hospital with a high fever. Until that day nobody knew that she had contracted a MRSA infection, apparently during the November transplant. The deadly serious methicillin-resistant Staphylococcus aureus very nearly took her life. After an emergency nephrectomy I telephoned Marilyn to break the news that her donated kidney had been damaged beyond repair. Always the giver, Marilyn’s first concern was Bobbi, then for me and my family. She never expressed any regret, then or later, for her altruism.
To say it was a horrible week is a gross understatement. We settled into the waiting room, each of us afraid to go home for even a brief period. Our brother and his family drove through the night from Sacramento. We took turns tiptoeing into her room, offering Bobbi verbal reassurances we hoped to be true, never knowing how much she heard or understood. Even after she regained consciousness, the tube down her throat prevented her from speaking. On Christmas Eve we persuaded the ICU nurses to waive the visitor limit. All fourteen of us–Bobbi’s nieces, nephews, mother and siblings with their spouses–crowded around her hospital bed and sang Silent Night. Keeping rhythm with Joseph Mohr’s renowned hymn were the beeping monitors and blinking lights of the hospital machinery, the same equipment which had offered weak assurance over the past few days that Bobbi was alive. Her eyes were open while we sang, and were by no means the only pair in the ICU filled with tears before the final chorus.
Doctors told us that she would need to begin dialysis, probably immediately, as the newly donated kidney had been removed and her system had taken a beating. To everyone’s surprise, the kidney she’d originally received in Chicago rose to the occasion and when Bobbi was discharged from the hospital it was functioning well enough to delay dialysis. Weeks turned into months and the kidney kept working. Two years later it was still functioning, although at a steadily decreasing rate. Early this year, the dutiful kidney that had served Bobbi beyond our expectations began to falter.
It was time for Bobbi to get back on the waiting list, and to prepare for dialysis. The options were few and none were ideal. In her complicated situation, it would be best to avoid dialysis altogether, but the wait for an anonymous cadaver donor could take months, even years. I couldn’t stand by and watch my baby sister suffer any longer. Most people experience a streak of bad luck sometime in their life, but Bobbi had been dealt more than her fair share. How could I raise my children to love one another, to be passionate and giving, while I stood by and watched my sister suffer? How could I defend a decision not to give a kidney to improve the quality of their aunt’s life? And how would I live with the guilt every time I reached for the phone to share a laugh or discuss a problem with my baby sister before I remembered that she had died?
Our surgeries were completed on July 29, 2008. We’re both healing right on schedule. My sister’s lab tests show consistently good numbers and her prognosis is great. It’s been just over a month, and I feel great.