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The 'Chosen One': Bonnie Parks Markuson and Seattle's Life and Death Committee
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By Sharon Pahlka Introduction Bonnie (Parks) Markuson has known something was wrong since she started wetting the bed in first grade. Her parents did everything imaginable to help her stop. They were told by the local doctor that she was lazy and just didn't want to get up. Bonnie kept getting sicker with severe kidney and bladder infections. The doctor even took out her tonsils and adenoids in an attempt to stop the bedwetting. She spent most of her time sleeping and wondered why she didn't have the energy to play with other kids. When she was 12, the doctor again minimized Bonnie's illness. "That's it," Bonnie's frustrated mom decided. "I'm taking her to the hospital!" Her family had no idea that she had come irretrievably near the end of her kidney function. The Road to Dialysis In 1966, Bonnie was referred to the University of Washington Hospital in Seattle, WA, and diagnosed with renal reflux. At age 13, she underwent her first surgery to repair the ureters causing the damage. At 15, Bonnie started experiencing numerous classic signs of kidney failure. She needed dialysis. Dialysis looked much different in 1968 than it does now. Bonnie's parents were taken into a room with a man on dialysis who happened to have many other problems. He was on oxygen and had a tracheotomy. They were horrified that this is what dialysis looked like for their precious young teenage daughter. Birth of the Committee Keeping Bonnie alive had unexpected challenges. She didn't know anything about the Life or Death Committee. But her parents did. They chose not to tell her. She did understand, however, that, without a kidney machine, she would die. In 1961, the first Artificial Kidney Center (later known as the Northwest Kidney Center) in the world was under construction in Seattle, and it faced a problem. It did not have enough kidney machines for the people needing them. And so, in the summer of 1961, a lawyer, a minister, a banker, a housewife, an official of state government, a labor leader, and a surgeon were selected for a group which became known as Seattle's Life or Death Committee. The committee comprised anonymous volunteers who served without pay. Few of them knew any of the others, and they only had a sketchy idea of their true purpose. With no moral or ethical guidelines except for their own individual consciences, their job was to decide who would live and who would die. "A Huge Burden" This was a huge burden. To lighten the load, a couple of decisions were made. Committee members automatically rejected patients over 45 years of age, who, being older, could develop complications. They also rejected children, thinking that the treatment itself might cruelly torment and terrorize a child. They considered a person's contribution to society. "The realization that each of us is going to die suggests to me that, so long as we are a part of life, we are in a position of responsibility to use that life to help others," the clergyman told Life magazine. The labor leader added: "Also, we just haven't got the funds. So, I want to pick the man with the most will power, the fellow who is least likely to give up... Suppose we take someone, keep him going, and he fails to follow his diet, or gets depressed and tries to take his own life? That can happen in these cases, you know. Well, this would deprive another patient of the opportunity we can offer. Character matters." Even though candidates could only be from Washington state, the committee still had to choose one out of 50 candidates for Seattle's limited life-giving machines. They voted to keep their own names anonymous as well as those of the patients they would consider. "Chosen to Continue Life" None of the committee members had ever heard of Bonnie Parks, on whose life they would make a life-long impact. I always pictured a person standing before this committee and stating his/her case. I pictured the lights dim so the patient couldn't see the faces of those making this ominous decision. Actually, the committee did not see any patients. They based their decisions on paperwork and input from the doctors. Bonnie's parents were told she was accepted because they did not have any patients her age and were interested to see if she would start menstruating. Bonnie was also a guinea pig, involved in research with a famous peritoneal dialysis (PD) pioneer, Henry Tenckhoff, MD. And so, Bonnie became a "chosen one"... chosen to continue life. "Everyone Was Learning" These were the first years of dialysis, and everyone was learning. Bonnie started PD under Tenckhoff using that doctor's new catheter. She used a machine on loan from the University of Washington, where the blood remained in her body, the poisons being extracted by a circulating solution in her peritoneal cavity. Bonnie dialyzed 24 hours that first time, and her parents were shocked at the different appearance of their daughter. She no longer had ankles the size of cantaloupes. Her blood pressure (BP) had been so high the doctor's feared brain damage if it was not treated. They had to give her a BP medicine that was still under investigation. The Battle Continues Bonnie dialyzed at home 9-12 hours three times a week, doing most of the hookup herself with the help of her mom and even ordering her own supplies. "I felt empowered by this," Bonnie remarked. "And my parents wanted me to be independent." Bonnie did need help transporting two large chemical solution bottles to their beach home each week. These bottles were made of glass and weighed 150 pounds each when full. The liquid had to be carried about 500 feet along a path, down a steep embankment, and across railroad tracks to the Parks' home each week. Though difficult, her family did what they had to do to keep Bonnie alive. After a few years, a new self-contained PD machine was devised--no more heavy bottles. Bonnie was the first person to be on this new machine, and Dr. Tenckhoff came to Bonnie's home to set it up. The apparatus "was a big steel tank you put water in which was sterilized by high heat and mixed with the solution bags." A Kidney Kicks In After 3.5 years on PD, Bonnie's peritoneal cavity wore out, and the famous shunt invented by the late Belding Scribner, MD, in 1960, was placed in her arm. She trained at the Northwest Kidney Center (NKC) for home hemodialysis and stayed on this modality of treatment until her first kidney transplant in 1972. It was a "perfect" cadaver match, but the kidney still rejected shortly after the transplant. She spent the next two months in the hospital back on dialysis trying to conquer the rejection. Back then, patients received painful injections of horse serum along with large doses of prednisone to reverse rejection. Bonnie remembers getting this shot 17 days in a row, the excruciating pain lasting eight hours each time. Finally, the kidney kicked in. It lasted 26 years! The Second Transplant After this kidney failed, Bonnie went on the transplant waiting list and received another perfect kidney two days before she was scheduled to start dialysis. Wow! She has now had this second kidney for eight years with no rejection. She did, however, notice a big difference between the two transplants. "[During the second transplant, the doctors] knew what they were doing," Bonnie recalled. "The difference was mind-boggling. During the first transplant, they would come in scratching their heads... 'Well, let's try this.'" She's glad she survived this more experimental era. An Independent Lady Bonnie's independence shows. She went to a vocational school after high school, moved into her own apartment, and has not stopped working to this day. She met her husband in 1976 and married him at age 28. This year will be their 25th wedding anniversary. Her husband has always been supportive and interested in Bonnie and her health. "He is a good guy," Bonnie modestly stated. Through two hip and two knee replacements, five ankle surgeries, a fused wrist, a shoulder replacement, and many other surgeries over the years, she has never asked: "Why me?" It did not occur to her. Bonnie is just grateful for being alive. "One thing to remember is that there are always people worse off," Bonnie said. "We are so lucky to be kidney patients rather than liver or heart patients who can't fall back on dialysis. I have always remembered that. I think I am drawing on some inner strength that we all have. I believe you are given only as much as you can handle." Conclusion After more than 30 years of government service, Bonnie plans to retire in a few years. "After I retire, I would like to go out and talk to patients who need help and encouragement," she remarked. "Today's patients are more isolated. Perhaps because dialysis and transplantation is more common, there isn't the patient camaraderie today that I remember we had in the 60s and 70s. We were pioneers back then, and it's hard to now imagine the experiments and sacrifices that went into keeping us alive." Bonnie doesn't think of the Life or Death Committee very often. Besides, what if she hadn't been chosen? She just knows the importance of making the most of her life and giving back to others. After all, the committee chose her to live. About the Author: Sharon Pahlka is a life coach in Seattle, WA, specializing in helping those with chronic health challenges live well and meaningfully. She spent 19 years on hemodialysis and has had a kidney transplant for the last 13 years. To learn more and read some of her other articles, visit her website at: www.lifeisagift.com. Last Updated April 2007
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